Traveling Tips

If you must travel, then here are some things to think about:  try to create an atmosphere of familiarity throughout the trip and be consistent, so they know what to expect when you take trips away from home. 

1.  Explain a little bit before hand what will occur  --  we relieved a lot of anxiety from my oldest son by giving him "notice" before changes, even if temporary ones, that this is what is going to happen.... it made him feel better to "know" ahead of time.  It really is just "controlling your environment" issues and it was really simple to explain .. and that is just a rule of thumb now for him.

2.  Eat at familiar restaurants  --  I remember taking a road trip with my son once ... one of our first family road trips, and he would not eat AT ALL unless, it was familiar setting.  STRESSFUL.   
He absolutely refused to eat food and fussed because he was hungry the whole time.  So, we started thinking about what places we generally go to near home and decided to find them places on our pit stops.  He would not eat once we got to our destination at their grandparents house either, so we had to eat at that familiar place ALL the time.  That was costly!  In the end, we learned that to keep peace and sanity and overall address a little boy's "eating" needs, we had to cut our visit at their grandparents short because he was not sleeping or eating well.  We were worried about him at that point and decided we would not stay as long as intended and just head back home, but we were happy to see grandparents for a couple of days. 

3.  Take day trips near your home and stay over "one" night at same motel/ hotel BEFORE you take any big trips and use those same motels/hotels during the travels at a later point.  It was like training them to sleep outside of our house and getting familiar with a motel/hotel so it would be familiar enough when we did travel and slept at that same motel/hotel....because they tend to look all alike anywhere you go!  We just knew after that point, we would not stay at other's homes often and would have to spend the money on familiar hotels, if we planned to travel.  Costly child!  I know someone might argue that just going to grandma's house "often" enough would create that familiarity, but if you only are able to go once every five years or so, then that is not likely...and motels and hotels are a better guarantee. 

4.  Stick to their comforts!  You know your child and traveling is not a time to experiment "new" things, so stick to those things that bring your child comfort.  Bring their favorite toys, foods, etc.... for the road trip because they are usually more strongly attached to their "things" at home than they are at the people involved, sadly, enough, it is a lot like dealing with a child with attachment disorder issues.  They will cling to their stuff.  For my son, it might have been his favorite yellow shirt, even if it is out of season, but he finds comfort that it is where he can see it, just like at home.

5.  I have had to learn the hard way, that there is no place like home....and you have to take the same security measures you do at home, anywhere else, so bring those things that help you keep your child safe....like a door chimer.  One of our sons, when he is in unfamiliar territory likes to explore, but he won't tell you and just takes off to do it, so at home, we had to put chimer's on our doors to know if he was trying to leave......it is usually just a sticker, so you can use it on your hotel doors too and take it off when you are ready to leave.  It will give you peace of mind, if you just make those adjustments.  You might want to set it on a lower setting so you don't scare the whole "floor" tho.....lol 

6.  Plan out smaller trips until you figure out how to manage your kid on trips and build on that for future longer trips.  I found that now my autie kids are older, that the trip in the car is nothing...it really is ONCE we actually get there and we are trying to live out of a suitcase for a short time.  They have such low adaptation skills, that doing the smaller trips really help them adapt to the travel concept long before you attempt anything major.

We don't travel often because it is costly for us to stay in hotels and eat out all the time at familiar places, which we found was best for them, but also expensive.  We take LOTS of day trips and someday we hope to take another "BIG" trip.  I love to travel, so it has been a huge bummer to not be able to travel much....but in the end, we only travel if we have the money to so and feel we can keep our kids safe during the time away from home.

GFCF

When my oldest two children, both boys, like before they were diagnosed, when I started seeing "indications" of the autism, but I didn't have a "label" for it.....I was asked about dietary stuff
A L O T ...and so we did try different avenues to see if they had allergies.  I had a good friend send me a book on lactose intolerance....and learned through reading that book, that I have it!  LOL  so, I did notice that the boys around age one, or their first birthday, after we introduced whole milk had some additional problems, so I started researching foods rich in calcium to add to our diet and we did soy milk for a season.  I did notice that the autistic like traits were more pronounced when they had too much lactose in their system, so we did benefit from this new diet.  My oldest, Grant, we noticed that after we discontinued milk, he started looking at us again, interacting with his brother a little more, and he stopped banging his head on the wall and having these episodes where he would go "white and clammy" and stiffen up all over....weird!  He loves ice cream like the next kid, so we take the alternative of frozen yogurt.  He does not know the difference.  We had to find pizza with hard cheeses on it, instead of soft cheeses....for those times he craved to be like other kids and eat normal like foods.  Now, my next child, he had like bronchitis and asthma issues constantly until we took it out of his diet...and it magically cleared up....and has not returned.  Interesting!  We permanently changed our eating habits after this discovery.

I did try a gluten free diet on them when they were younger or what they call casein free diet.  I never saw any improvements.  Gluten is very hard to avoid, so we had to be on this strict diet for months to see any real affect.  In the end, it was pointless for us.  In fact, recently, I collected over a five year period of time all gluten free products in our basement for food storage.  When my husband got laid off, we lived from that storage.  I personally noticed how much better I felt, so I have avoided wheat since that time frame.  I discovered this year that whole wheat does not affect me as badly as the white enriched wheat flour which I am totally avoiding.  If I do eat wheat, then I make sure it is quality stuff.  My whole family has accepted my conversion to whole wheat nicely.  I sparingly eat whole wheat.  I think at some point I will get the Celiac disease test for myself to be certain.  If I test positive, then I am willing to go GFCF completely.  I will also test the kids, if I am positive. 

It has been a gradual process.....but in the end, as we discovered things we improved our diet.  I was not willing to just give up something in my diet unless I could actually prove there was a reason for giving it up.  I am always researching the food industry because I see developments of things that should be healthy for you, turn out, not so healthy because the food industry is advertising it to be healthy and substituting unhealthy in their products to save a buck.  I care about what I put into my body. 

Echolalia

All my "auties", all my boys, they have gone through a stage where they are building up vocabulary in their mind, and they seem to verbally "stim" on certain words.  Doctors refer to it as "echolalia" and they just keep saying one word, over and over, kinda like a broken record. 

Right now, my youngest, he is stimming on the word B-R-A-T.  He will start breaking rules, say the word, and giggle uncontrollably, then say, "that not funny".  Now, I remember saying "that is not funny" to him one day when I heard himself refer to himself that way, and I have no idea where exactly he heard it, but it reminds me sorta how toddlers learning language in the copy cat stage repeat everything they hear, good or bad.  I know it will pass, but in the mean time I feel sad when I hear him say it.  I doubt he understands that word in the true sense of the word and meaning like I do.....so I will just ignore it.

When my oldest was in this stage, he heard in the word S-P-A-N-K at school from a kid that picked a fight with him the bathroom.  The kid said to him, "don't (do something he didn't like) or I will spank you" and it scared him so much that all he could communicate to everyone was "i am going to spank you" in that echolalia kind of way.  He didn't have language fully at that time to tell Mommy what happened at school, and no one could guess hearing him say that he would be referring to that incident.   If you haven't already guessed, then I will tell you....that was a stressful time for us....because there are so many implications with that expression.  A teacher over heard him say it, and she thought the worst of us as parents.  She called an undercover cop located at the school to interview my child, without my permission.  My child if interviewed would have said, "yes" to all questions he did not know....and I knew that, but did they consider that, umm, no!  I got a special call from the school and came down to hear their concerns and felt interrogated myself.  I was not a happy camper that I learned that due to lack of funding for paying for paras in the school district they started cutting their hours.  The special education teacher decided to ignore his IEP and not give him a teacher's aide anymore, so he went from completely depending upon one, to uh, NONE....hello, don't you think you should wean a child first?  Not a good idea!  I doubt this incident would have taken place if he was not sent alone to the bathroom.  I figured out their was a conflict in the bathroom and that is where the word was learned, that he meant "hit" by that word, but I didn't get the full story till much later, when his language came later.  To my benefit, I had just became a foster care parent, so we had a back ground check done with that six months and training and was cleared to the state to place kids in our home.  They knew us.  When they got the call, they felt these claims were not even valid, so they did not further investigate.  We didn't even know they were called!  It came up in our annual visit where were review our license.  I just find it ironic.   It was a mixed blessing they knew us so well. 

I am glad my youngest chose a less politically suggestive word to repeat.  I have decided it could be worse.....

ESY

ESY stands for Extended Year Services. If you notice your child regressing when they have time off from school, then you can ask at the next I.E.P. Meeting when you sit down to assess goals to see if your child qualifies for these programs. Usually, they do, but they don't initiate those needs even if it is obvious. They are going to wait till the parent or caregiver mention it before they consider your child for that program. They will test throughout the next year to see if they retain what they learn. If the child does not qualify, then you will have to pay for tutoring on your own. However, if the child does qualify then they will recommend a summer program at the middle of the break to review things with the child -- typically on a traditional calendar schedule. We did this every year because twelve weeks was way too long for my little guy and we felt like he lost all we worked towards and it was frustrating to say the least to feel like we had to start again near the beginning. When we moved near an area that had the option of a " year around schedule" and never had more than three weeks off at any one time, I did notice a good improvement in his learning. It has been a great benefit. If you have that option, then it something you might want to consider.

Deficiencies

As my son gets older, I see a common thread at IEP meetings.  He does not understand abstract concepts, but he does just fine with the pragmatic skills.  He struggles with problem solving skills and that just affects so many areas.  His challenge is to understand expressions that are abstract like IDIOMS, where people do not say EXACTLY what they mean.  I hear jokes all the time about how men really don't "Get" women because they are too abstract, but this really "takes the cake".  He just does not understand different form of expressions, like sarcastic humor for example.  He will take you literally at what you say.

Reading comprehension seems to be a constant struggle.  I usually give him a post it note to stick on his chapter while reading and hand him a pencil.  The post it note, asks, "Who?", "What is happening in this chapter?", "Where?" and "Why?' and it helps him to look for those clues while reading.  I will stop him at the end of each chapter to summarize what he read and talk about it.  I am training him to do so.  This has greatly helped his reading skills this past two years. 

Language arts is just not his thing.  Although, I loved the resource teacher he had for many years at his previous school who focused on this area.  She must have loved language arts because she focused on this area, and I did see a great improvement in his understanding during her time with him.  If you saw him now, then you would be amazed with his ability to organize his thoughts into a written form.  It is one of his favorite past times.  He writes his own stories, comic strips, and plays that he persuades his kid sisters to play act out with him.  I am so thankful for that inspired woman!  She's helped him out a great deal.  His current two page summary book reports look awesome and like a kid for his age group, but Mom still had to edit it because I occasionally still see grammar and punctuation mistakes.

They are always working on social skills too.   It is tailored to his needs.  He typically gets these goals interlaced with speech therapy goals because his speech is just fine, but the way he talks or interacts with others comes out through speech. 

One of the biggest reasons, that he has for needing special education services is not so much for the educational goals, although in order to get special educational services you have to make up educational goals...but the big reason he still has help at school is more behavioral concerns.  He is a perfectionist.  He struggles with the ability to regulate this emotions by himself and still needs coping strategies.  As the gets older, the demands of school get harder, so this plays a role.   I think it is difficult for him to process that each teacher, which changes each year, they have different expectations of the students.  He gets overstimulated in a big group and works better in a smaller group, but all the schools we have attended are overcrowded so he has to cope with bigger class sizes.

They give him sensory breaks to help him with the behavioral things and help him take a "breather" and remind him of the coping strategies while there.  It is only about ten minutes long, but long enough to take a short recess from whatever worked him up.  They redirect him and send him back to class.

When he has the emotional support placements lined up, he functions at a very impressive cognitive level.  However, we learned last year, as we moved to a different state and dealt with many changes that change is very hard for him and also he clashed with his teacher, that he functioned at a much lower cognitive level.  I was tempted to re-assign him to a new teacher because I was really concerned, but then I realized that life is not that perfect.  He needed to learn how to deal with conflicts too and clearly this was one of those moments.  I decided it was good experience for him to learn to deal with life's unexpected things.  We survived that ordeal and learned a lot from it.   I just hope most years we have things going smoothly, but as you know, it is okay to occasionally deal with the "bumps in the road".  

Humor

Since I am a foster care parent, I sometimes have kids in my care that aren't mine.  I got the privilege of spending a week with a girl still in foster care at age 20.  She has Aspergers.  In many ways, she reminds me of my oldest son.  She is very high functioning and at this age, she is very independent in many ways, but you see the need to "walk her through" new stuff.  I already do this with my son, so it felt "right at home".  She sticks to a bus schedule with certain bus stops she knows and having to take a different bus stop to my home made her uneasy.  I could see it.  I could see the disconnect in her mind as it was unfamiliar territory and she didn't like the change. 

I was told she is very social.  She was very engaging in conversation.  However, her social abilities seemed limited to me.  She would go on and on about her interests.  I noticed she lost interest when it was not HER interest.  I am told that is typical and definitely an Aspergers trait.  I was telling stories to the younger foster kid I also had this week about how awkward middle school was.  I laughed a lot with the younger girl.  I did notice that the older girl with Aspergers did not laugh and seem to miss the humor in it all.  If she did laugh, then it was sorta a forced laugh because she didn't want to be left out.  My son does that when we tell jokes.  My son likes to take the initiative to tell jokes or at least try and they never make sense.  We usually laugh to be kind, but he really is clueless in that department.  Sometimes, when we are alone, I try to help him tell jokes.

Later, I can say that this girl also tried to share a story that was similar, like an embarrassing sort of story that would make one laugh....and she connected beautifully with what we were talking about and showed the ability to follow up with a similar story....however, she told her story in rather a mechanical way telling details that were kind of irrelevant to the story and you kinda felt lost in the story but in the end, there was the embarrassing part in the story.  I think most people would have stopped listening and be bored with the story but we hung in there and let her finish.  At the end, it was kinda funny.  We all laughed.  I think she just thinks in a more technical kind of way. 

When to diagnose?

When do we seek for a diagnose?  Good question!

I can say the sooner the better for treatment options.  However, if you do it too soon, then you may miss some underlying issues that don't show until later.   

I am thankful that I got my oldest child into an intensive therapy and language program before age 3.  The results were fantastic.  He is the poster child of why you don't delay a diagnose and enroll them in a therapy program.  He responded really well to it.  Within six months, he was talking and responding to structure and routine.  It was awesome.

However, follow your gut feeling. 

My next child, I was not ready to take him to be diagnosed and I let some well meaning person persuade me to take him in for testing.  He was borderline and we didn't get a proper diagnose from him, and half his issues didn't start showing until two years LATER.  I regret that I let him be tested at that time.  End result, he was enrolled into a program that didn't work out for him anyway.  I wish I had waited.  We took him to another doctor for a second opinion and they were too lazy to test them appropriately and wanted to rely on other doctor's notes.  We have struggled through the years to get some to take us seriously.  We know and have known through the years he has OTHER issues unaddressed despite we KNOW he is on the autistic spectrum.  They just want to say, "oh, he's autistic!" ...uh, well duh!  That initial testing set the stage for the rest of his life.  I had nothing else to bring to the plate except he is on the spectrum.  The only thing, we were able to do was get a psychologist to see him at age 7 and agree he had hyperactivity issues and agree to try to medicate him for a while.   The medicine helped for a while and then he built a tolerance for it.  The side effects were worse than the original symptoms, so we took the course of natural remedies.  He's a long story, but basically I wish I had waited until he was 7 years old to have him tested.  I believe he would have been able to get special education services regardless of the diagnose because his needs were obvious. 

I have chosen with my youngest to do things differently.  I am allowing the school to do their testing for placement purposes and making an IEP goal sheet for him so the teacher knows his needs and they have a plan at school in treating him.  However, I am going to wait till he is 7 years old to take him where they diagnose him.  He is very high functioning, if he is on the autistic spectrum.  I don't see the need to do it before that point.  The school is handling his needs beautifully. 

I am comfortable with that decision after what I experienced with the older two boys.  I have had people ask me and I decline answering.  It is none of their business.  The school should NEVER ask you unless their is some legal reason too.  

Holidays

For many years, holidays, they felt more like HELL-I-DAYS.  Why?  Simple.  They would be out of the typical routine.  Whenever they had a break from school, then they would cry and scream at the door when the bus didn't come and it went downhill from there.  As they got older, they saw traditions that we did each year  for each different holiday, and it helped to have the consistency for the holidays so they would know what to expect.  They don't like their schedules messed up.  Now, add traveling in there....everything in their world is whacked.  They let you know how they feel.  This probably explains why I don't travel often because they are so out of control the whole time we are on vacation that we don't get to relax, or visit with loved ones, and we are even more stressed.  For many years, I did NOT enjoy and actually dreaded the holidays because I knew it was coming....and sure enough...it did.  It is all about structure, structure, structure!  This post does not get into the details....but maybe someday, I will relive one of my experiences for you...just so you can get a glimpse.  Trust me...it won't be pretty!!!

Pica

Pica is a common problem with autistic children. They crave non food items and it can be potentially dangerous to ingest the inedible things. It's believed that they are deficient in some nutritional way and it is resulting in strange cravings.

My eldest son would stick human hairs in his mouth and my second son who is also on the spectrum would suck on rocks. I was always afraid they would swallow it. Vaguely, I recall pulling hairs out his feces and that is when I got concerned. I started noticing him picking hairs off blankets, pillows, carpets, or wherever he could find it. Constantly, I was telling him not to do it. Do you think he stopped? Yeah, right! Next, I was trying to limit access to hair around the house...near impossible. I started buying fabrics that didn't collect it, either clothes or blankets to reduce exposure to it. Rocks were a little easier to control in the environment than hair.

I discovered this topic again when my son was doing this again tonight....ten years later. I have not seen him do this for years. I reminded him that if he swallows too many hairs, that he will have a hair ball stuck in his tummy and a doctor would have to cut it out....Does he want that? He is old enough now that he can think about the consequences if he did that habit. It was not so easy in his toddler years to just talk to him. I am glad a decade later it has gotten better.

Memory

We have three different types of memory: short term, long term, and working memory. The brain retrieves short term memory first. In young children, the short term memory is under developed, so it is quite unreliable. Many educators learned from scientists that to help children with memory, they had to learn through repetition. Programs at school began to follow those facts as a rule. As they learned through repetition, the things learned in short term memory would move to their long term memory. Repetition helps strengthen the neural pathways and also helps children retain what they are learning. Short term memory holds information very shortly before the brain deletes it. However, if the information is repeated, then the brain will store that information in the long term memory, so you could think of this as a storage file. You can retrieve information stored a lot easier than the information missing, so that is why long term memory is so dependable. Now, the working memory is the memory you have at present and the retrieval process of the information in your brain. It checks short term memory first and then later checks the long term memory for data that you are trying to recall. Hippocampus is the part of the brain that is in charge of dealing with facts in the long term memory. The cerebral cortex Is the distributor of memory and it does so through categorizing it into different areas and next storing it according to our five different senses: touch, taste smell, sound, and sight. These two areas belong in the Frontal Cortex. Since kids with autism are "wired" differently, the functioning processes of memory are also different. You can click on this link:  http://psychology.info/index.php?option=com_content&task=view&id=56&Itemid=44  to study that difference: As I mentioned in a previous post, they tend to rely upon pictures. This link focuses on the Amydala. The Amydala involves the part of the brain dealing with emotion and memory.

I was watching you tube videos this morning of adults on the autistic spectrum do to cope in the world with their memory problems.  http://www.youtube.com/watch?v=ACFE9WpzlzA&noredirect=1  It was interesting. For example, They will usually state their date of birth when asked their age because it is easier to recall a memory that never changes. It's consistent, as your age changes every year.

I was fortunate that this information on memory was fresh as I had just graduated from college, so I could apply it into motherhood. It was redundant to go over the same info constantly for my kids benefit, but I knew in the long run it would be for the best. I knew repetition would bring critical and basic info to the long term memory. I made it a goal.

Observation Games

At some point, I noticed my three boys had a hard time coming out of their own little worlds, respectively. I wanted to help them become more observant. They seriously could not find things right in front of them, even if I was pointing to it. Over the years, I have made up games to help them overcome this struggle and thought it would not seem like therapy if I made it fun.

First, I started out selecting books like, "where's Waldo?" that were age appropriate. We would sit together and look at a page and I would say, " I spy a (finding an item)" and I would point to it after a minute after I paused. They got the idea. At which point, I could next take their pointy finger and have them find it with me. At first, I was silly about it and intentionally selected a different item (or two or three) each time saying is that the (item we are searching for)? and say "no, that's not it"...by this time they are giggling. Finally, I would point to the right item and say, " yeah, we found it!". I would prompt them to find it on their own by taking their pointer finger and touching the page while saying, " your turn" and "find it" and as they attempted to do it I would say, " that's right, go on "... Until they completed the task.

It was a " hand over hand" thing at first, but then I would drop my hand back and just prompt them by touching their hand or taking their pointy finger to the page. Eventually, they did not need the prompts anymore because they started to recognize a pattern of words said, like "find it" they could expect and connect to this little game. All I had to do at this point was say verbally "find it" or in my case "I spy" and they would. We started to play this game later outside of books and into our environment. In a previous post (trait #1), I talked about generalization. One would think, all I had to do was say, "I spy..." and the kid would know you are ready for the familiar game. Most kids would make the connection and find item in new setting, but autistic kids usually do not. At this point, you would be back at the starting point, in the new setting, going over the SAME EXACT teaching method. You would need consistency. It takes them awhile but they do eventually connect that the game they know so well is being played outside the book and in a new setting.  It becomes fun to play in the car and when your outside taking walks. It is a rather slow transformation, but they get there if you are consistent and constantly presenting it to them. I expounded this game to give them a simple direction to find something that belonged to them, like "I spy shoes" and next instruction " go get shoes".

Once they located object, we would go over new instruction. It helped to have another adult they have worked with often in a similar way at this point take over the next instruction(using same method of "hand over hand, then prompts, then verbally using same words they know) to teach them the "go get..." game. At this point, you would stay stationary in your spot, while the other adult lead them to you each time. The little ones might respond better to positive reinforcement, like food treats each time they get it correct, like tiny marshmallows or gold fish crackers(things they enjoy).

This method would be considered a discrete trial using an A.B.A. Approach to teaching. When they were much older, I introduced those hidden object games on the computer, the same EXACT way I did in books and in our environment. It is very redundant but in the long run, it works! It takes a lot of time and patience. Let's not forget consistency!

Thinking...

Autistic kids do not think in words but rather imagine it as thinking in pictures. They are such visual learners. After reading a book called "thinking in pictures" by Temple Grandin I was better able to understand this...amongst other things she discusses in her book.

Some behaviorists would see this as a weakness because they rely upon it so heavily thinking, that it becomes a crutch to ever being able to cross the bridge of ever learning to learn like other kids. However, I see it has a strength. Where would they be in life without this gift of theirs? I am happy for them that they have a way to learn the same concepts as other kids despite they are wired differently in their brains. In some ways, they have an advantage. It easier for them to visualize and in our fast pace digital world they can see better than the rest of us word thinkers in a sense. I started using visual tools and visual aids as I tutored the boys when school was not in session. Behaviorists would not encourage their strength in this way. I think I have some personal understanding as I have a gift myself. I have a photographic memory and dreams that very detailistic...that it helps me to see things uniquely but does not impair me. I plain disagree with their viewpoint. I think you can teach with both. I focus on just trying to help them overcome their challenges with all the tools we may have on hand. I don't see it as a counterproductive argument either, that would be equivalent to arguing the old philosophical question "is it nature or is it nurture?". In my opinion, they BOTH play an important role. In this case, I think the visual teaching tools can help anyone understand concepts better. Have you ever tried to assemble something following instructions Only using words as your guide? Fun, right? Now take the same set of instructions and add visual examples! I bet that would make the assembly go much faster. So what, if you prefer visual aids in your instructions! Who wouldn't really? Point is: if it works then, it works! Use it. It can be viewed as an asset rather than a liability in this equation.

Imaginary Play

I have observed that all three of my boys struggled with imaginary play at the age kids typically start with role playing.  We bought role playing toys when they were toddlers and they were not the least bit interested, even when I initiated it.  I will be honest I don't have that kind of imagination either.  Perhaps, they get this from me.  However, I did try!  They did not play with those cute little preschool sets.  After many attempts, I finally gave up.  Surprisingly,  two of my boys, they started up role playing and imaginary play (pretending) later on down the road.  I was not expecting it.  I had already accepted maybe it would not happen.  However, they were just delayed.  My 12 year old son, he started only a year ago doing what most toddlers do in this area.  He has always had a dramatic personality and his teacher last year really brought that part out of him.  We were surprised when he auditioned, signed up for, and practice for a play all without our knowledge.  I learned about his play from his best friend a few doors down like the night before the play.  I came to school to watch it and was so glad I learned about it in time.  I had no idea!  He was one of the leading roles.....and he did a super job!  Wow!  I felt like as I watched him, "Is that my son?" because it really took me by surprise.  I am glad he had that opportunity and that the teacher saw something in him and encouraged it.  It was a good experience for him.  My second son, he is ten years old.  At this time, I have still not seen this capability, but I have hope he could grow into it later.  My youngest, he is five years old.  I see him pretending that his balls are planets as he names them.  I think he is only a little delayed and I am encouraged to find those little play sets, like a barnyard animal farm set.  He is starting to show interest in animals. 

So, I have concluded that it is not impossible for autistic kids to do imaginary play or role playing, but it might not happen chronologically where other kids do this....it might come ten years later!  I would not be surprised if only the high functioning kids are only delayed where the lower functioning kids do not develop it later....I would be interested in comparing notes with a mother of a lower functioning autistic child.  Just my thoughts. 

Boy, Oh, Boy

Most scientific journals will tell you that it is four times more likely that boys will be diagnosed with autism than girls.  You rarely see a female with this disorder.  I just read that currently 1 out of every 99 children are being diagnosed.  It is more prevalent in this generation than in the past.  They are still trying to figure out what causes Autism.  This is a global epidemic and after studying many races, ethnics, social economic groups they have found no singularities to point to it only being with a certain group.  It truly is a mystery.

Usually, a certain gender being affected would suggest a genetic anomaly, but after much research they still have not found why it is affecting boys more than girls on the whole.  

Sign Language

I tried out sign language with my kids before age 5.  I personally think it is a good tool when the autistic kids were younger because they were forced in a sense to "look" at Mom when she spoke.  It improved their eye contact.  Despite, I used that method, they never returned the favor.  They do not sign back, but they responded in a way that told me they understand what I am signing.  It's visual too, so they understood it a lot faster than the verbal exchange.  I was not able to get other adults to support me in this endeavor, but we used this at home.  Sometimes, my husband will do it and sometimes he would not.  Mom was the only one that used it, in the end.  After they started attending school, I supported the picture exchange system coupled with verbal script-ic text they used.....just followed their lead and supported their endeavors instead because I have learned it is less confusing for them.  I was a bit bummed no one would support me because we did have some success with it.

IEP

When my oldest was two years old, I called my sister n law.  I knew she would have the knowledge to help me find some resources for my son.  Her son had some language delays as I recalled when I first got married and met my husband's family.  I learned that school districts, or at least most of them, offer to pay for early intervention programs to help children succeed before they get placed in the school district officially at age five.  I called the school district and asked for their special education department and told them my concerns.  They offered to test him.  We saw an audiologist and screened them for things they should be able to do at their age.  Next, they find a program in their school district that offers educational benefits., therapy, and other services to help your child.  Sometimes, the bus transportation is provided and sometimes it is not.  In some places, we have lived, the school district actually requires an official diagnose to address specific needs, like occupational therapy for example.  We ended up at a regional center where they did further testing and can  make those kind of diagnoses by a team of doctors and your services in the school district expand because of the need, if your child is significantly delayed and the typical preschool centers aren't a match.  We were referred to one of these centers and in time both of our first two sons were diagnosed with Autism.  We found programs for them to attend.  Once we had a program, then we sat down and discussed between parents, program staff, therapists, and doctors what this child needed.  We established an Individual Education Program just for that child.  It is nicknamed after it's acronym or IEP for short.  You work as a team to establish those goals to help your kid.

It's not the only way to get services, but it is the easiest way.  I have friend that prefers to have a 504 plan instead.  You can research that alternative, if you feel the need.  This alternative does not let the school district be in charge of the services, but puts the parents at the responsibility of seeking out, paying for, and ultimately taking care of the problems the child has.  The parent has to show "proof" they have been servicing that child, if problems arise at school.  I have seen how individual cases were better with this 504 plan.  It is the parents choice.  The school district will not force their programs and services on you, but you have to be prepared to communicate how you are handling your child's needs, if you take that route.  Usually, the school district does not ask unless their needs are evident at school (after they are enrolled at age five years old, typically) and their is no plan in place to deal with the problem directly during school hours.  They will insist on a plan because they are liable at school if things happen to the child and no plan is there for them to deal with the problems that they face with that child.  They can't just ignore the problem. Legally, they are limited in how to deal with your child if there is no IEP in place for them.   Also, they can't let that one child's needs go unaddressed at school and disturb the other kids educational goals.  As a parent, you will need lots of communication efforts to make this alternative succeed.

I speak in terms of public schools here, but some places do offer private schools that deal with only autistic children.  It's not a free ride, tho....you have to pay for that placement.   You have to be prepared to pay for it out of your own pocket.   I checked into a couple of private based schools that offer intervention for autistic kids and offer great services.  For ONE child, I would have had to pay the equivalent of what I was paying for my mortgage.  It would be like paying for a double mortgage after I did pay my house payment and the tuition for that school.  I couldn't afford one child's tuition and I certainly would not have been able to add a second child only a year later.  It was not an option for me at the time, but it is an option for those who are able to put a little money out for their child's education.

Ten years later, after my first two children, both boys, were diagnosed with Autism....there is far more resources and programs for treatment and education to this diagnose than what existed when I was seeking for help.  I am confident that if public funding fails because our economy has been affected so extremely that public schools can't offer as much as they do right now, that there will at least be schools you can PAY for that kind of thing.  This is good, but the people it would hurt the most is families that don't have the funding to pay for those kind of schools.  

Travel

We have attempted to be like other families, we have planned vacations.  In the end, we come back feeling more stressed than when we left or needing a "vacation from our vacation".  For this fact, it has not been appealing to me to attempt it "often".  I have such adventuresome spirit, that I want to see the world.  I soon learned that my boys do not share the same enthusiasm as I do.  Basically, they don't like their "routine" interrupted.  There is no place like home.  To be honest, it is really difficult to set up hotels and other people's home that offer us to stay with them to be just like we do have it at home to ensure their safety.  At home, I have a chimer on all the doors for example, that helps me keep track of the kids.  I have one kid that likes to wander off and explore but he does not understand community safety rules like "don't talk to strangers", so I have to keep very close tabs on him.  Even though we have tried to teach him to stay with his parents and follow safety protocol, he still does not "get it".  He has gone missing several times and I have thanked the angels who have watched over him till I found him.  A few of those times, it was when we were on vacation.  We struggle to travel.  We are very thankful for those willing to come visit us because over the years it has been hard for me to see loved ones that are long distance. 


I do however like to travel so much that I have settled for LOTS and LOTS of field trips.  We don't go far from home and we see what we see in our own state.  We enjoy what we have around us.  I find that a whole lot easier and it helps us to get out of the house and enjoy our surroundings. 

Trait #5

Kids on the spectrum have lower adaptive skills than other children. Typically, they take change to be very hard. They will seek for a pattern or a routine in their lives or familiar surroundings so they can come to know what to expect. It is hard for them to function without it. My boys just THRIVE on structure. If anything in their day was slightly off they would start throwing a tantrum. Who would think something as simple as changing a picture on a wall would upset their world, but I kid you not...I bumped a picture and it was crooked and that created a fuss. They can be so particular about the strangest things. I had one child for a season that would only wear yellow shirts. We learned quickly that life was a whole lot easier if we just followed a routine. They learned how to cope better. As a mother of three boys on the spectrum, it is hard to feel like you are walking on egg shells all day trying to not upset their surroundings because if you do than all H-E- double hockey sticks break loose! My life is far more rigid than I ever thought imaginable. I have told my hubby on occasion that for a season I am willing to do this for kids sake and my own sanity, but down the road when the kids are older and off doing their own kind of things, if I say, honey, we are going to some unknown vocational spot, say Bombay, then you better fly with it baby because this lack of spontaneity in my life is driving me personally C-R-A-Z-Y....I have always had such a adventuresome spirit....so this is totally not me to be so ritualistic. At the moment, I recognize it helps my boys to follow a rigid schedule but hopefully my life will not always be so rigid. I have also observed that when they cognitively comprehend the concept of time things became so much easier. It goes hand in hand with understanding structure. I could say it was time to read or play or bathe or eat by simply verbally adding " time" to the end of each action to communicate that next thing in the schedule.

Trait #4

Kids on the spectrum do not imitate others.  I was told this by a doctor, and I think it is true from my observation too.  Although, I did see their ability to imitate increase, as structure was introduced.  My children are high functioning, so I am not certain about the lower functioning kids on the spectrum if they are able to overcome this.  The lack of ability to imitate affects a lot of different areas.  It affects communication, social skills, following instructions, play skills, interaction with others or relationships, learning in a group setting, like watching and following a teacher in a classroom, learning concepts that require them to imitate a person, understanding safety or community rules, and many aspects of their life. 

I want to put a t - shirt on my boys sometimes that says, "I am socially impaired...what's your excuse?" because they do so many socially unacceptable things and people are not kind in the least bit, even the ones that KNOW they are Autistic yet don't understand the nature of the disorder and still expect them to have a full understanding of those social rules.

As a parent, of course, I know those rules and I probably have taught them or told them thousands of times but the fact of the matter is it takes them longer to understand those social rules.  I am constantly "hearing" comments from others about how I need to correct my children (usually it stems from something they saw my autistic son do).  I just love how they assume I am a bad parent and totally have not tried all these years to teach them those basic fundamental things.  In the end, I end up laughing because it is their ignorance of the situation.   I am amazed they feel they have the right to talk to me so rudely, so that is why I say, "what is their excuse?"  I don't think it is socially acceptable to be in the habit of telling others how to parent, as if you are a better parent than the rest of the world.  I mean no one is perfect, right? 

I definitely have become to be more forgiving of a parent as I see her/him struggling publicly with their child and consider there may be factors there that others don't know about and truly that parent might being doing their best.  Currently,  I try to think the best about everyone before jumping to assumptions.  I can't say I was in that mentality before I had children, but I have definitely done a turn around.  I specifically remember one incident.  I was single and went grocery shopping.  I saw a young mother struggling with a four year old who was throwing a tantrum about something and my first inclination or thought was "gee, woman, get control of your child".  Now, I just absolutely cringe that I had that thought.  I didn't know the first thing about parenting.  I was single and not even married yet, nor children of my own.  I have learned a lot since that moment in time and I regret to say I misjudged that lady.  I think it is human nature to take only your own viewpoint and experiences to look at a situation to judge what should be done.  I rarely see a person consider that they are limited in their knowledge and experiences when coming to a conclusion of any nature.

After all this reflecting, I can say that at present, if someone rudely said something to me, then it might hurt my feelings for a little while but in the end, I try to remember that people are people and just move on in my thoughts to forgive their ignorance because there is no way they can know my situation entirely.  If I think about it long enough, then I will realize I might have done the same human error of jumping to conclusions in my thoughts or misspeaking, if I were them.  It is also the reason I don't weigh so much on what people simply say because they are only sharing their opinions or their limited knowledge.  I have even been exposed to experts and professionals misspeaking, so I don't limit it on just certain people.  From time to time, we are all guilty of misspeaking, or speaking without thinking about it.  My mother-n-law, she told me once that it would be more charitable to not inform the person who misspoke then to lash out because they would probably go home feeling very badly having treated someone so unkind that day.  You would feel better too, not having stooped to their lower level of thinking.  She is a wise woman.  I am thankful for that advice.  It has helped me.  It might not change my experiences in the world, but it does change how I react to it. 

Support System

For many years, I had to learn how to cope without the resource of my family relations when we needed a break from the kids.  Every once in a while, we might get an offer from family members, but we could not expect them to offer the kind of help we needed. At times, we didn't even live close to family to even ask.   When the boys were younger, we needed a daily routine followed, training on the boys, certified people that you can trust, and desperately needed a break on a daily basis.  We were fortunate to have good church friends that offered respite every now and then, so that we got a date night once a month a season here and a season there.  We appreciated ANY respite we got, but it was not enough.  We could never actually say that out loud...it would be entirely too rude.  Most people did not understand our challenges and needs to know they should consider offering it more often (not that we expected offers).  We were taught to be grateful for what little help we could get, so we accepted what offers came gladly....well, i mean within reason....there were on a couple of times I said, "no" because I knew they were only being kind or polite in offering but they really were not in the position to really truly help, despite their "heart" was there...and I declined.  I had to learn quickly to get over the hump of asking people for help as I was at first shy to do so.  I found that many people are willing to help, even those who really can't.  I have also found that asking does not always mean you get the help...a combination of those two.  I had to come up with a support system.

My husband and I, we both needed a break, so we learned how to take shifts with the kids.  We reserved the right to do things together, like quality time, when people would offer randomly to watch all the kids for us, of an evening.  Next, we found a local support group, that we could attend.  We learned a lot from others facing our same challenges and didn't feel "alone" anymore.  It also linked us to resources in the community to find that would help us, where family and friends could not.   Sometimes, we could find a respite program or a respite caregiver agency that we could pay to come and help us.    I also chose to belong to a couple of online support groups selectively to have other mothers to talk too when my choices were limited and I was looking for answers.  I signed up for inexpensive training, either through newsletters, magazines, or classes offered in the community.

As a couple, we decided to put our family first.  We had to make decisions that most couples might not have too, but it was right for our family.  Once, my husband, he had to sacrifice a high paying profile job that clearly had it's advantages monetarily but in this case was too far a commute from home and took the lower paying job so he could be home when I needed him, mind you, it is not often, but if I get sick or something it is a back up plan to know he can come home at a moment's notice.  We have had to decline social gatherings on occasion if our family needs do come first.  We just knew that the realities are different from other family dynamics so we made adjustments when we needed too.

I also find one neighbor that I can call upon in an emergency, like when my husband is not available and I desperately need a respite.  There is an understanding there, that you might not call on her often, but one day she might get that call.  

Ear Infections

When my oldest was teething for the first 18 months, it was HORRIBLE.  First of all, his ear canal was hereditary smaller than most kids...turns out, it runs in the family on my husband's side.  Every time, he got one individual baby tooth he would also get a nasty ear infection.  As an infant, he got extra fussy and as a toddler, it felt like he just grew a monster horn instead because he would start acting out....I had no idea what was happening.  I could only take so much of that onery behavior.  He was a real "Dennis the Menace " at times....it always led  him to eventually screaming at one point and grabbing his ears.  At that point, I would think of the possibility it could be an ear infection and see a doctor.  Yep, he had one!  He had them so often, that we opted to have ear tubes placed inside his ear to help drain the stuff in the canal.  He was the happiest guy after we did that procedure.  I just have to say, that he didn't have language to indicate that need, so it was very hard for mom to figure out ... but after a few infections in a row I became more aware of that need as thy frequented.  I definitely do not have that gift of E.S.P. so having children who can't communicate has been the strangest experience. 

We got a break from ear infections and teething concerns, but when they hit school age where they were losing their baby teeth and getting bigger ones.....we still saw some behavior that was unusual.  It always ended up being related to dental matters.  With one child, his dental matters bugged him so badly that he literally chewed off the cuffs and collars of his shirts, that is when I figured out his teeth were bugging him, so I would give him what I call "chew" toys for autistic kids...it is an occupational therapy oral device.  If you don't know what that is, then you can ask an OT.  I bet all Occupational Therapists know just what I am referring too.  I have heard stories of other autistic kids chewing up furniture, so just keep that in mind.  It is better to buy the oral devices than to replace couches or chairs in your living room. 

Self Injury Behaviors

I am told that this topic is considered a trait, but I have only seen one of my children do it when he was younger.  I had a flash back today as a I was recalling memories.  I was reading this article on self injury behaviors that autistic children can have.  I read an article years ago, that they know at some point, they are "different".  They feel it.  Desperately, they want to be like the other kids and belong, or like someone once said to me, "want to be like the other wolves and run alongside the pack".  Trying hard, they keep trying to accomplish something others are doing but just can't.  It is emotionally hard to cope with that kind of disappointment in life, so they become perfectionists.  They literally punish or abuse themselves for being different.  I read this article after I had my own experience with my son when he was younger.  It just broke my heart.  I love him so much and he is wonderful to me, no matter what his limitations can be.  I think he is amazing little boy and a big spirit to overcome all that he has had to do.  Most kids, they take for granted the simple joys and experiences they have in life with their capabilities, yet I have had to watch my son work really hard to get that far.  My son is a quick learner and has progressed so much faster than other kids on the spectrum.  Many people knowing him as a toddler and now have seen him are amazed at this progress.  As a mother, I just know he will do wonderful things in this earth life.  He is so intelligent, loving, talented, gifted but no matter how much I tell him so, he really is hard on himself.  As a toddler, I remember him literally physically trying to beat himself up.  Fortunately, he does not physically harm himself since that stage, but it has turned into an emotional battle.  He always feels that no matter what the does, that he will never be good enough....for other kids.  The perfectionism comes out at school larger than it does at home because I am certain that at home he feels love and accepted.  I love that he still comes and asks mom for hugs. 

My memory:  Between 2-3 years of age, I went to his bedroom to check on him.  I found him banging his head, literally, on the wall.  He kept going faster and faster, harder and harder.  I was so scared.  I was worried he would hurt himself.  I could not get him to stop.  I did notice he was as white as a ghost and stiff as a board, like he was physically reacting to something.  It was the first time he had done something like this.  I could not figure out why he was doing this.  I was desperate to keep him out of harm's way, so I put a pillow between him and this wall.  At one time, I had to even restrain him because he would not stop and fought off my attempts to cushion it.  We saw several doctors and did lots of testing that year.  I got the test results and nothing came back really that was conclusive.  He would have these episodes.  I cried a lot because I couldn't understand why he would want to hurt himself and why he would not stop...it was this ritualistic motion of banging his head on the wall.   It was a hard year for me because I had to handle it on my own too.  My husband would wake up at 4am to travel 90 minutes to work (traffic issues in CA) and wouldn't get home that evening till I put them to bed or was ready to put them to bed around 8pm....I admit I let them stay up long enough to see daddy before putting them to bed sometimes.  I tried to explain my experiences to other adults, including my husband but I felt like it was not your typical parent to child interactions, so I knew my husband was clueless what I was describing in my day.  Like many others, he would try to be sympathetic and encourage me to see doctors.  It was very fruitless and expensive and it led me no where.  I prayed a lot, that is for sure.  It was unbearable to go through this trial with him.

Later, I was led to believe that he was having an allergic reaction to a dietary thing.  I took it out of his diet and his eye contact improved and he stopped this self injury behavior.  I have not ruled out allergies being a reason why you see strange behavior on the kids on the spectrum.  They have no way to express with their language something simple like "i have a headache", so they could be so miserable.  I think I agree with those giving me advice who I confided too, that I should see a doctor.  After all these years, I would advise the same thing.....rule out medical reasons for behavior before assuming the behavior is intentional.  They truly are not trying to drive you crazy....even if it feels like it sometimes.  If you don't find answers through doctors, then ask around the community and do your research....you might come across ideas that help guide you to the answers.  Don't give up!

Trait # 3

Another common trait on the autism spectrum is the tendency that they have to use self stimulatory behaviors. Now, it is normal for the human race to have moments during boredom or stress to reduce to these behaviors, such as biting a pen, knuckle cracking, or chewing off finger nails. However, they do have some cognitive control over the behavior itself, but kids with autism are simply obsessed with it, much similar to the compulsive behaviors of that to a person diagnosed with Obsessive Complusive Disorder and maybe their need to clean but can't seem to stop themselves. It's not something they love to do but it provides the type of stimulation they need and they are driven to do it. Kids that also have sensory integration disorder on the spectrum are extremely driven to these behaviors. Speaking from personal experience, one can't persuade them to just simply stop the behavior. You can try to redirect their attention, but ultimately there is nothing one can do to prevent it, stop it, or get rid of it. Trust me, of all people I know how hard it is to live with it. It can utterly get on your nerves. The best advice that I have is to teach them more appropriate self stimulatory behaviors and ones that are NOT liable to drive others insane, like jumping on a trampoline for example. Self stimulatory behaviors are nicknamed "stems" or "stim-Ming". The most classic self stimulatory behaviors seen with children that have autism are: A. Hand flapping B. Waking on tip toes. C. Flipping on & off light switches repeatedly. D. Spinning. E. Making " fish" patterns. F. Watching things that spin. G. Opening & closing doors constantly. H. Any unusual repetitive or ritualistic behavior, like rocking They usually prefer to engage in these behaviors rather than play with toys. They do it for HOURS on end. They will do it for weeks upon weeks. I vividly remember my oldest spinning. Normally, a child would get dizzy and fall over from that much spinning. Nope, he would literally do it for hours! I could not handle them spinning in front of me for very long because I would get over stimulated myself. I would move to another room so I could get a break from it. I also remember having company over to our house would witness these things and laugh because it was funny and amusing to them. Sure , if you saw it for a brief time it might be, but they didn't realize was that they were not just being goofy...they did this A LOT, and I do mean A LOT. It was absolutely unbearable at times...um, still is! I am so past laughing...and sometimes just coping silently, as the world is simply clueless at what distress it can cause a mother to be around the annoying behaviors. No, I do not think it annoys just me. I know it would annoy most people. I also remember light switches blinking way to often and doors never fully shut nor open...and due to obvious issues, I could not just ignore I did have to put a stop to that, so I invested in other more acceptable things they would enjoy like swings, balls with handles they could bounce, a trampoline, and/or slides...thing that would not ruin one' s sanity. It was worth the investment.

Trait #2

The first trait one might take notice is the irregular speech pattern(s). You will typically see one or more of the following: A. Delayed speech B. Little or no speech C. Non speech Vocalizations D. Echolalia E. Confusion with pronouns & other grammar errors The non-speech Vocalizations are noises or sounds they express. There is a classic Dr. Suess book called "Gerald McBoing Boing" that demonstrates this kind of thing in a positive light and is a must read for kids. They also have an animated tv version of it.

P.E.C. 's

When my oldest was in a private preschool, we were introduced to not only an intensive language program through discrete trials using the A.B.A. (applied behavior analysis) method, but also, a visual communication effort called Picture Exchange System.  You can buy online these days a computer software program that offers, literally, hundreds of little icon pictures that mean different things to indicate what you are communicating.  Usually, you would download it, run it, select those icons and use your home printer and some people laminate them for protection.  I was able to find free downloads of the internet, so I never bought the software.  We were fortunate that after a few years, we didn't need the P.E.C.'s (for short) anymore, that we could communicate what we expect verbally.  However, there are families that may need to use them longer.  I saw success when the schools used these P.E.C's as visual prompts in their daily routine.  I tried a similar thing too.  I put these P.E.C's around the house for chore charts and schedules.  My kids didn't really look at that sheet, despite I pointed it out every morning but I ended up putting them in a binder and if I could see they didn't understand my verbage, then I would pull it out and point to the icon that we both knew meant what I was indicating.  Many have had success with the Picture Exchange System.  I highly recommend it.  The more visual aids and visual tools you can add to their education the better.  They are such visual learners.  It is their strength. 

Pronouns

Before children understand proper grammar in our culture and language, they will make common mistakes. Typically, you might hear a toddler say "me" instead of "I", in a sentence like " me want juice". Between infancy and toddlerhood, a cognitive change takes place where they see themselves in infancy as one being or rather an appendage to their mother or primary caregiver and a transformation happens where they emerge into viewing themselves as a separate entity and begin to use the "I" pronoun in their sentences. Most teachers have noticed that autistic kids mix up their pronouns.

For autistic kids, I believe two things are happening. First, they stay in that infancy developmental stage a tad bit longer delaying their cognitive ability to see themselves as a separate entity. At the same time, they form an atypical attachment to their mother and/or caregiver. Normally, one might think that would actually make it easier to do so. Secondly, the audio processing center in their minds are functioning differently, so they learn differently and language is not received in the same way as others. They are creatively wired you could say. I believe that bridge is crossed differently in their mind, but that it is not impossible for them to merge on the same path at a later point  having gone in a different direction. It is just achieved differently.

In my own children, I have experienced a variety of different things during this developmental task. My oldest child, he was delayed but he went through typical stages. About age three, I started seeing typical attachment behaviors. My next child, he hovered in this stage far longer than I ever hoped, desired , nor dreamed and I am also seeing attachment issues, so that must play a role too. My youngest child, now being tested, he reminds me a lot of my oldest child in this stage but only milder. I have no doubt he is attached because he shows typical behaviors, and he progressed through this stage much faster.

 I am not a scientist, but this is what I have observed.  Years ago, I did read some research supporting my theory,  but it just my thoughts...at present. My spiritual inclination is that they are so attached to their Heavenly Creator, that even after birth to their earthly parents, it is hard to detach that connection that is strong,  and it somewhat interrupts their ability with engaging their new earthly parents. They do form a connection and appreciation to their earthly parents, but they form an atypical attachment too. It must be hard to temporarily be forced to forget that Heavenly place their spirits derived. 

Squishy Time

Once my boys were to big to be "burrito wrapped", we came up with other occupational therapy we could do at home. My son now calls it squishy time. I start out with the brushing technique, next the Joint compression method, and finally a massage with baby oil or lotion. My boys just CRAVE it. It helps to calm them when they are hyper and sometimes overstimulated. I got these ideas and demonstrations from a therapist. We would drive twice a week to a therapist that was 45 minutes away for a very short session. I watched and learned. Plus, my health insurance only covered so many visits. When the visits ended, I felt confident enough to do it from home. We saved time and money too, not to mention my sanity! Years later, we can read our kids better. Currently, I have one child that gets these laughing fits right before his meltdowns, so we know it is time. It is much better to catch him at this stage than when he is tantrum-ing. Brushing technique & joint compression method: click here This link has some great info on autism too.

Switching Hats

Once the kids were diagnosed, I had to take some additional training, so I would know how to deal with their special needs.  At home, I feel I play several roles.  I switch hats!  Sometimes, I am a their teacher and sometimes I am their therapist, but I am ALWAYS their mom.  It was hard to bounce back n forth between the roles in the beginning, but I have now finally found my rhythm.  If all else fails, then I will separate the roles so they know clearly that I am Mom.  For example, I try to teach them at home, but if they are not willing to cooperate with my teaching method, then I will find a private tutor for that subject for a time.  Each of my children, they are different in their learning.  I can say that one child, he will sit down with me and is willing to be taught.  He is my work book kind of kid.  He would be very easy to home school, but since I feel he needs socialization I send him to school.  I am very selective about school placement.  I wish I could say all my kids are willing to be taught at home, but that is not the case.  I have one kid particular that will not work for me no matter what I try.  He is best taught at the school.  In his mind, I am not the teacher.  I stopped fighting that years ago and accepted it.  In the long run, I would rather be Mom anyway to him.....being Mom is much more fun!  Teachers can't hug these days.  I can.  Teachers are stuck with conventional methods and I am not.  I can teach even when they don't realize I am doing so.  We can take field trips whenever we want or go outside the "box".  I am finding my role as mother much more fulfilling. 

A.B.A.

There are many in the autistic community that are excited about and actually rant and rave about A.B.A. which is an acronym for Applied Behavior Analysis.  It is a behavioral intervention that helps give children the ability to learn through discrete trials and motivation.  We lived in California when we were introduced to this type of therapy.  It has had a high success rate with children on the spectrum, so they have created schools that are solely based on this strategy.  We were blessed that my oldest was placed in a private school with partial public funding based on this therapy.  He was only 2.5 years old when diagnosed and enrolled into this school.  I admit it was hard for me emotionally to let go of him this early and not keep him at home.  However,  I believed with my whole heart, he needed it.  It was located an hour from my house, so I had commute back n forth.    It turns out, it was just what he needed.  He was a fast learner, and in six months, he was more or less graduated from that program.  At that point in time, he was moved to a cluster unit of high functioning autistic kids for preschool age.  This new school, it had some ABA based things, but it also provided alternative approaches to teaching.  When my oldest was diagnosed, he was considered pretty moderate on that spectrum, so it was a privilege to have him join the high functioning kids.  He did super in that classroom too.  By kinder garden he was mainstreamed.  He started out with needing a teacher's aide in the classroom to help him adjust, but he was slowly "weaned off" that need.  I want to say it was second grade, that he truly didn't really need much help in the classroom, but he still need sensory integration breaks because he would sometimes get overstimulated.  I was trained on ABA myself at home, and I was really GUNG-HO on this type of strategy.  I really know a lot about it.  It was exciting to have something really working for us.  I also studied child development and psychology in college, so I already had a knowledge base for it. 

And then....my second child, he was diagnosed about six months later, now they said he was borderline and honestly didn't know if at 18 months old, he showed enough on the testing to determine if he was on the spectrum, but he had enough delays to get early intervention for him too.  I opted a program that was home based for him for the next year and a half where tutors came and went all day long in working with him while my oldest went to a public school just down the street, in walking distance.  They were half day programs, but since my younger one was so infant like they considered the nap he needed in that schedule and that is why it took part of the morning and part of the afternoon.  I liked most of the tutors but it was a bit obtrusive to have someone always in my home.  It was also A.B.A. based program.  By the time, my younger one was 3 years old,  I was not happy with having it based at home, and we had determined that A.B.A. method was REALLY not working for him, like it has his older brother.  I was VERY pleased with the preschool that his older brother was attending down the street, so we got him enrolled there.  I think it was mostly a LoVaas method focus called T.E.A.A.C.H mixed with four other strategies.  He responded a lot better to this new program.  We were thankful that the other alternatives was partially working for him. 

My concluding thought about why A.B.A. did not work for him and did for the other one was based on one very important fact, the A.B.A. assumes the kids have the capacity to understand cause and effect.  They have to be able to develop some reasoning skills appropriate for a toddler.....and well, I mean toddlers don't have much reasoning skills, but they do start to emerge into that phase as they understand language that there are opposites.  Unfortunately, my younger one took a much longer time to understand cause and effect. 

We had to start from scratch with my second child, he just learned differently and his personality was in many ways not the same as his brother.  It became REALLY complicated as  parents to understand those differences, meet their individual needs, and handle it all.  They couldn't be more different in many ways.  We did our best.  It was neat for a spell when they were in the same preschool class before my eldest started kinder garden.  They were so close in age, that in some ways it made things easier and in some ways complicated it too. 

When did they talk?

In my experience, they start talking in their first year....and well, something happens in the second year where they either regress or just plan stop for a time. At some point, we hear language again by school age.  I believe they are still absorbing information and learning language but are not able to express it like other kids.  My oldest, he had baby language the first year and then in the second year nothing.  After he started speech therapy, about six months later, we started to hear it again.  He was three year old at that time.  It was limited speech.  At age five years old, he just bloomed in language.

Now, his younger brother, who is only sixteen months younger, he is also on the spectrum.  Our experience with him was very different.  He had typical language in the first year and regressed the second year.  The doctors have told us he is considered non-verbal.  His language was scrip-tic or what the therapists taught him.  By age seven years old, he was still not really talking in a functional every day kind a of way...it was still scrip-tic.  We needed a way to talk to him, so we taught him how to simply say Yes or No to questions.  Later, we would give him choices, like apples or bananas and he would answer one of those to indicate his needs, wants and/or preferences.  He seem to be able to handle those one word answers.  We continued to build on that strategy.  Three years later, he is trying speech out with us.  He will now say three word sentences on a regular basis.  We went through a spell of requiring him to say " I want " before everything he was requesting.  The school invited Junior Achievement to their classrooms last year and did a wonderful job in teaching the kids the difference between wants and needs.  We were already discussing it somewhat at home too.  So, I when the kids asked for something I would simply ask them first, is that a want or a need?  In his case, if it was a need, then I would say what I needed him to say, which was: Ask Momma, "I need" in front of that sentence, so he would repeat the request with I need such and such instead.  Now, we had two kind of sentences from him.  =)  He picked up on that real quick and it taught him also the differences between wants and needs.  I think kids need to know that.....  Every now and then, I will hear his attempts to speak and when he does, it comes out unclear.  We have to be extremely patient, not correcting him when listening.  It sounds like "scrambled eggs" like the grammar is off.  It reminds me of the Spanish language exactly,  but with English words.  They would say in their language, "you I love" instead of the way we say it, "I love you" and that is just an example.  Sometimes, I can filter what he is saying and other times I am not able too.  I am just happy he is trying to express his thoughts because I know it is hard for him.  When he is in this mode, I just let it happen and don't try to correct him because he gets all flustered.  Every once in a blue moon, we do hear good speech from him like he is really connecting that day.  It's interesting too, he will not use baby words but big words for his age group, like he is picking up language all these years in his learning despite his obvious delays in speech.  It's not baby talk.    I have had well meaning relatives say, "what do you mean that he does not talk?  I hear him speak all the time".  They don't understand the doctors definition of talking, that he is considered non-verbal. 

My  youngest one is at kinder garden age now.  I have to say that his speech has not been unusual.  He has followed the typical pattern of kids that talk, but he is just delayed for his age group.  Just behind.   The biggest difference between my youngest and my two oldest would be body language. 

Body language is often something autistic kids don't really SEE .  They aren't able to see the social implications or the unspoken that other kids do.  They aren't reading body language and they aren't able to express their language through gesturing either.  Often times, I had to state the obvious with them, which felt rather rude as a mother to do so.  However, they just didn't see it.  So, I had to point it out.  I always tried to do so in a kind way because I really don't like myself when others assume you don't "know" something and point out of the obvious.  Rather, my oldest, he would listen for your voice inflection to consider how you feel because he could not read nor understand my face expressions.  I do think they "sense" when things are off, like their routines, but they typically would not be able to see the obvious emotional undertones that people do have.  I noticed my youngest one does see the body language, so either he is an exception to most kids on the spectrum or his issues are different.  He is still being tested at this time.  Out of the three, he is the only one that seems to be able to see body language and when his language was limited he used lots of gesturing to make his needs known.  

I am making some general statements here and can't speak for all autistic kids, but this is what I have generally observed.  

Manners

When my kids were diagnosed, they were toddlers.  They were already delayed in language.   I knew that they would not always understand why I was teaching them certain things.  I do know mothers who would say, "oh, they don't understand, so why bother teaching it?"  Well, I would respond because if it is important to you or something as a mother you strongly feel they should know, then by all means....you still should teach it.  Don't give up before you have even tried.  I decided I would teach all my children, including the autistic boys that a certain manner of speech was expected from them since they were learning language at that time.  I figured if they heard it from us from day one in conversation that it would just come natural to them down the road.  I was aware as I taught them that they would not really understand the social implications.  I taught them anyway.

So, at home, when I asked them to do something for me, I demonstrated what I was teaching, so I would say the request followed up with please at the end.  I would say thank you after they finished the request. I set the example.   Before my boys were able to respond appropriately, I did a lot of role playing.  With my eldest, we actually used Popsicle sticks and glued a person's picture at the top of it.  We would follow a script.  I would have a picture of him on one of them and a picture of myself on the other one.  At first, he would just look at the sticks and follow the dialog and not really respond.  He just observed.  Later, he reached a point, where we could pause and he would say what was expected of him.  I always slipped the please and thank yous, in there, of course.  Eventually, after they had learned language enough to use it in a functional everyday kind of way, then I started expecting them to use "May I" when asking for things and follow up with "please" and they also had to say "thank you" when receiving it.  If they refused, then they didn't get what they asked for from me until it was said.  They learned real quick that Mom says yes most the time when asked in that certain way. 

I went through this again, when adopting one of my girls.  When she came to us, she didn't have those manners and I have always felt it is important, so I taught her too.  She was quick to use these teachings in the exception of telling people "thank you".  It got to be a sore struggle with her, so I added on a little emphasis in her teachings to teach this by giving her a gift and if she didn't say thank you, then I would take it back till she was willing to say it and explained to her that we show gratitude for what we get by simply saying it.  She made me laugh when she asked sweetly, "well, what if we don't like the gift?"  I said, "well, we still say thank you because it is the thought that counts..." It was the only real issue I ever had, and I felt it was one of the easiest things that I accomplished.  (well, in comparison to the other things we had to accomplish)  

Picture this:  Several years later, we are as a family at a restaurant, an open buffet, and I was giving my older kids a little freedom, not babying them, and letting them serve themselves.  I was hoping they would remember the manners I taught them and I stood back to observe.  I understand my autistic boys limitations, but however, people in public are not always so kind.  It was hard enough for them to just wait in line for food, so I knew that would challenge them mentally and also to remember their manners.  I was pleasantly surprised as my oldest was standing behind an elderly lady who was naturally slow (and I could see he was growing impatient so I started to scoot closer in case I needed to intervene and teach, again.....however, I wanted to give him the opportunity too, so I continued to observe) that in that moment he kindly, sweetly, using his manners, asked the lady, if she would get him the fruit, please!  She responded in a smile and said, "well, certainly" and she did so.  He thanked her and was on his merrily little way.  It was a golden moment for me.  The lady looked at me after he departed and said, "what a wonderful young man he is.  you have taught him well".  Whew, it was a relief.   I was happy that despite he was not able to be patient enough, he at least achieved his means by using his manners.   I smiled and said, "thanks" and walked away.  You never know what your kids understand in their teachings until pay days like that one!!  I was also thankful she didn't judge him harshly and was able to see that he was trying...his best!

My little Papoose

I read some things about doing occupational therapy at home.  Before my kids were school age, I got some ideas do help them with the sensory integration disorder needs.  My oldest two, they were only sixteen months apart.  They both would roll around in blankets.  They really liked certain materials.  I read about the benefits of burrito wrapping them in these blankets and putting pressure on them. Their heads were sticking out on one end, so they could breathe.  I belonged to a support group at that time with mothers facing similar challenges and a few of them had done similar things with success.   The research came from studying the Indian culture and how the mothers would wrap up snugly their papooses and put them on their backs while they did their chores.  I always wondered how women anciently dealt with infant and toddlers when they didn't have babysitters but head a full days ahead of them, so I found this article interesting.  I also had been to a museum where this was displayed, so I further researched it.  Ultimately, I began wrapping them up once a day and holding them tightly but gently.  First time, I remember they screamed for twenty minutes straight and cried and kicked, they didn't like being confined.  I was thinking how on earth did these mothers bear that and accomplish that?  You would think I was torturing them.  I would do this when they were overstimulated and "out of control" and that was how it was an indication for me that it was "time" to do the therapy.  The idea was that this helped them decompress a bit.  I can tell you I didn't like holding them down as they wrestled.  However, after that 15-20 minute window, something amazing happened, it was like their physical body just suddenly stopped wiggling and would relax.  I know relaxed when I see it!  All of a sudden, they were happy and relaxed.  They were back in control of their little bodies.  I think I cried with them in those minutes they wrestled because it was hard.  Once they relaxed, I would change positions and just hold them normally and sing to them softly.  They were really connecting with me at that point more than they usually do.  At one point, I considered abandoning this idea because I wondered if they hated it.  I mean after all they screamed and kicked so much, but then after I had done it often enough....they actually indicated they wanted the therapy.  They would grab the blanket and bring it to me and try to wrap themselves.  I took the prompt and it could not have come at a better time because I was really starting to doubt the idea.  Oh... They still wrestled and whined, but they must have liked that relaxed feeling they got from it all. 

Therapies

We live in a world where the resources are a wide-span of ideas and theories.  I strongly suggest you filter through the information, weigh it on your mind, even pray about it, and then decide what is best for you and the child in question.  I can say from experience that what works with one child may not with the next, so there is no ONE RIGHT WAY to do it.  Therapies are designed to help kids, but they do not cure them.  If you find something that does work, then stick with it.  I found that some therapies were just plain too eccentric for me and not realistic while other one were interesting and worth trying.  I make a joke today that I hope my kids don't need "therapy from the therapies" they got when they were younger because we tried a few that didn't work in the long run, vacated that idea, and went on to find ones that were a better match.  If it feels right, then do it.  If it does not, then I would avoid it.  A decade ago, the "Holding Therapy" was real popular....and it was to help kids with attachment issues.  Since kids on the autism spectrum have attachment issues, I thought it might be interesting to try it.  I actually think it made it worse with one of my kids.  I think he still resents me to THEE DAY for that therapy.  I meant well, but in the end, it was not for him.  I was not completely unsuccessful....I found that he liked to be burrito wrapped like an Indian baby and what we know call "squishy time" or a deep compression massage.  I will probably post in the future and talk more specifically about each therapy, but before I go there, I have to say there are some pretty wacky ideas out there so make sure you pick a therapy that makes sense and has a lot of research and tests to back up the theory.  You don't want to do more harm than help. 

Food Therapy

When we introduced baby food to my oldest, he was okay with it.  As we started giving him table foods, that is when all the true frustration began....we came to realize he had "issues" with texture in the food he ate.  He also would only eat food that a certain COLOR on one side of the rainbow, closer to REDs.  I can laugh about it somewhat now, but seriously, I could not at the time.  We wasted a lot of food trying to figure out what he would eat or not.  We were like most young couples who are just starting out so we didn't have that kind of money to splurge.  After all, when I was a child if I dared waste food like that I would have been spanked.  I had learned the economics of eating what was put on your plate because I was lucky to have it there in the first place.  I also wanted to put some weight on him since his heart surgery, so the fact he was an extremely picky eater just frustrated me all the MORE.  I am happy to say I didn't resort to spanking because it is just not me, but many people in my situation having been raised that way probably would not have thought twice in that situation.  I chose to look into other parenting strategies. 

I read an idea to keep offering the same thing till they ate it, and most mothers said they had success with it, so I tried it.  The idea was that they would eventually get hungry enough to try what was on the plate.  You put it in the refrigerator and just keep offering it at the next meal.   I bet normally that would have worked wonders, but not with my little guy...I was a little worried that after many days he was only still drinking milk and not touching his food.  I figured out this method was not going to work and he couldn't afford to lose weight as a I experimented with parenting strategies.  I read something about that time frame about food texture issues and it got my mind a whirling on that possibility.  I tested out that theory, and we were successful.  Finally, I got him to eat five foods, then ten foods, and it kept increasing by doing what I call "food therapy". 

You start with smooth foods that they can tolerate, then you slowly add in texture.  For example, you would feed them pudding, then tapioca pudding, then pudding with crushed up cheerios, then pudding with whole cheerios mixed in it, and finally the chunky stuff.  It was getting their mouths slowly used to texture or to learn how to tolerate it.  I am happy to say by age 9, he was eating mostly everything I put on his plate, and now he is a very healthy eater!

I have to say I never did figure out why in that stage his foods only could be a certain color, but we respected it as best as we could.  I just remember one day we took him with us to my husband's office party, and there was a bowl of red grapes on the table...and he pigged out of them.  I was truly surprised because he would NEVER eat the GREEN grapes at home.  LOL

I have read that there are correlations to food textures issues and sensory integration disorder, so you might want to consider occupational therapy with oral devices too.  We didn't get occupational therapy until they were school age, so I came upon that later in my journey. 

Trait # 1

Often, you hear about the "traits" that autistic kids have that are common.  Generalization is one of them. 

It's my understanding that most kids on the autistic spectrum struggle with generalization.  What does that mean?  They might learn rules or concepts in one setting, but it does not necessarily transfer over to another setting.   I found it important early on to build good relationships with the teachers at school, so we could provide similar things or support each other in both environments -- and it helps the child too, to know what to expect. 

For example, I find out what works for the teachers and I try to apply it at home somehow.  He learns that all caregivers expect that same rule.

I found myself chuckling in the car this week, when I was telling one of my sons, that rule, "keep your hands and feet and other objects to yourself" applies everywhere!  I was saying the acronym version that school uses to say "KYFOOTY in the car, KYFOOTY at dance lessons, KYFOOTY at church, KYFOOTY at home, KYFOOTY at school, etc....to make my point.  Of course, I will have to say this repeatedly for a while till he gets the GENERAL message.  I will have to say it in different settings and remind him constantly.  Fun!