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!

Potty Training

When my oldest reached five years old, I was feeling pressured by the community to have my child potty trained before he started school.  I had tried a bunch of different strategies and it was just not happening.  I was blessed in my research on the topic to find out that I needed to lower my expectations EXTREMELY with my autistic child because on the average kids on the spectrum are fully potty trained between the ages of 6 and 9.  You can simply "google" something to that fact now, and walla you have a statistic and plenty of information, but ten years ago I had to scrap for that valuable resource.

Obviously, that is much later than most kids, so I had to let go any fantasies it would happen before kinder garden.  Quickly, I had to learn how to be an advocate for my child educationally speaking.  I will perhaps talk about that alone in another post.  Let's suffice it to say, that I had to make it an IEP (individual educational plan) goal for the teacher to support my efforts to potty train since after first grade she had him most the day.  I am thankful for Grant's first para or teacher's aide, Nicole, who made it her "goal" to get him potty trained that year.  As wacky as it sounds, she sat him on the potty chair all day long till it naturally happened and then had a "potty party" for him.  She pumped him full of juice so it was bound to happen at some point.  I tried this method at home but it was a different setting so he didn't cooperate for me.

  So, at age seven, my oldest was finally potty trained during the day.    I chose one weekend to do the same where I required him to do all his activities just sitting on the potty.  Oh, the drama!  It was awful.  Once he naturally went at home, then it was yesterday's news.  He just had to do it that one time and we were good after that....but it was not easy!!!! I think I reached a point where I just have had it.  It took TWO of us to hold him down, clean him, and change his pull up.  A seven year old is much stronger than a toddler.  A year later, he was also dry during the night, so technically age 8 it was official.

The trick for him in that last year to stay dry, it was putting him in these padded underwear looking night pants that www.onestepahead.com offered.  By this time, my second autistic child was 6 years old going on 7 soon, since they are only 16 months apart.  It was a tender mercy from God, that once my oldest child did it, that he noticed and virtually overnight was potty trained through the day himself.  I was so relieved.  However, it took him a while to stay dry at night.  The pants that worked for his older brother did nothing for him, and I believe it was due to several facts:  1) he had sleep issues that his older brother did not, so once he fell asleep he slept pretty sound, 2) he has more sensory issues as well, so it was a matter of getting him to sense it at night, and 3)  his personality is far more different than his brother so the same strategies never seem to work for him, as it was.  All in all, I figured out, that by having him wear boxing shorts instead helped him sense it was time to go.

  My daughter was so much easier to potty train, although, she was a stinker and wouldn't initially do it for me.  I took two different ideas from my sisters for her, and it worked like a charm.  First, she ran around the yard in a summer dress and no undies for that entire summer before school began in the fall after her Aunt was able to get her to sit on the potty and try.  It helped her to "sense" the need by running so care free and she rarely had an accident.  My youngest, who is five years old this year, he is also on the spectrum...and he has yet to be potty trained.  Ultimately, I have learned that you can't rush it, and they know when they are ready.  Also, each child is incredibly different.  What an adventure! 

Church

Okay, so naturally my thoughts went today towards church attendance being that today is Sunday....and well, there is a lot to be said about this day.....namely, all the parents that feel challenged with kids under the age  of five years old to get anything out of church, so all parents have a complaint in this behalf, am I right? I mean it is a mere miracle to get them all dressed and out the door on time.  I can say no different, of course.   My kids were so high maintenance that it made attending church nearly impossible.  Our church goes for three hours straight, so it is really hard for the little ones to sit that long....any kid!  Now, my kids, they are over the top and most people would have easily given up and I say this after interviewing a lot of people with autistic kids who quit going to church for a while because it was a battleground...it was probably hard enough to motivate themselves out the door for various of reasons, but to get there and feel like you are not spiritually fed because you are dealing with a constant battle with your child, and that would really sink one's hope for sure!!  I literally paced the halls so much that you can probably hold me responsible for wearing out the carpet there.  I just stuck with the idea that if we kept coming to this strange place than it would become familiar and eventually we would work on the kinks in the road to actually teaching them about why we are there each week.  My sibling would and actually has openly admitted that my personality is very determined and stubborn, being the goal oriented person I am, that nothing would deter me and he meant it...nothing!  I laughed because he is right.  Once I get an idea in my mind, I have a hard time letting go of it.  It's a blessing apparently and a curse!!!!  It's blessed me with being diligent no matter the battle that I didn't give up and just kept plugging a long....and by this point, I feel more like a soldier than any other role.  I thank God, that I had a break with my daughter in between my second and fourth boy child because she did not have any of these challenges and I did get to enjoy church for a few years, but guess what?  Ha!  I am back to the battle front.
I have no regrets and it is amazing to see how far my oldest one has come because I didn't give up on him.  Today, he was sustained as a deacon to the Aaronic Priesthood.  It will be such a blessing to have another priesthood holder in my home!  I was not dry eyed today.  His teachers will come up to me and tell me they are truly humbled when they have had him as a student because he knows the gospel so well and takes it seriously for a kid his age.  Now, I won't take all the credit, but I am starting to see the fruits of my labors.  It's like that feeling that, "I knew it, I knew it!  I knew all this hard work would pay off someday.  It's an internal  feeling that can't be put primarily into words.  He is a good kid and I love him.  I see this young man that tries hard to do what is right and understands the gospel far more than I ever did at his age.  I did ask myself many times when he was younger as I memorized the hall walls, "why am I here?"  and "what's the point?" because I truly wondered if he got anything out of being there and I sure know I didn't feel like I was.....but I am glad I didn't let discouragement tamper my hopes, that I was able to keep an eternal perspective on things.  I don't know what I would have done without the gospel and the message of hope it adds to one's life in facing problems as big as mine.   I could not do this without God, and I am glad I don't have too. 

Popular question: When did I first know?

I am guessing I was so physically and mentally exhausted the first year, that I only probably focused on the basics like changing diapers, feeding him, etc.....and GETTING SLEEP, and the fact, I was a first time parent, that you could say "normal" was sketchy at best, or what I knew about it.  I knew what I read in books and he hit all the physical milestones JUST FINE....he was so strong too.  I felt like he was a very engaging infant until he got to be about 18 months old.  We played peek a boo around his first birthday and he would giggle.  I can't say anything seemed "off" until his language was supposed to develop.  He started off with some cute baby words.  I remember him saying "Ba" for several things, like Bath, Ball, Bottle....and only I knew which one he was indicating with that same syllable.  Something changed around 18 months.  He just regressed.  The little language he had stopped.  We would call his name and he would not respond.  The eye contact was fleeting.  Other caregivers, they started to express their concerns because he would not engage with other kids.  Instead, he would go to a dark, cold corner, underneath a table and hide himself.  I was surprised he did this.  I had no answers for it.  I had no clue why his behavior seem to change overnight.  These are just examples, but I started to know about that time frame that something was just not quite right. 

Gift

At present, I tell my oldest child that we named him Grant because he was a belated first year wedding anniversary gift (Grant means to give) and that God gave him to us.  I also thank him for making me a Mommy because that was very special too. 

I do have some very special memories of him laying on his tummy on my chest as we both napped.....that was the only way he could tolerated being held...and it became our favorite position!  

Tactile defenseness

Mothers really enjoy holding their babies. Well, so did I. Babies love to be held. My first born had an innate need to be held like most babies, however, he was not able to find pleasure in it like other babies because it was painful to him. I remember him arching his back and letting out a big cry every time I went to gently pick him up. He was so sensitive to my touch that it was painful. I did the usual methods of calming a baby, but no amount of singing, rocking, swaying, caressing nor talking soothingly did squat for him. Infact, it probably made it worse! What new mom would expect that? Better yet, who would figure that out quickly? I would like to say I did but the better part of that year I did my best and dealt with a super colicky baby instead. Eventually, I figured this out. It did help that I studied human development courses in college as a minor to my studies which is not the norm for most first time parents. I saw clues if you will that something was not quite right with my little one. My baby did have heart surgery when he was two weeks old, so that was never too far from my mind either. When frequent doctor visits and checkups ruled out possible medical reasons for my infants distress, I had to start looking for other answers.

In the Beginning

I was like any mother, in the sense, that I didn't know what I was getting into (lol), but I was definitely one of those nerdy mothers that was so excited that I read every parenting magazine, textbooks about expecting a child, and I couldn't wait for this little being to be born!  I dreaded the pain and labor, but who doesn't?  I had no idea my son would be born with special needs.  Surprise!  I admit that I was clueless the first year on some level because babies are babies...you have to around the clock feed them, change their diaper, etc.....but my little one was born with extra medical issues so I figured he was adjusting to the world in a rather harsh way and it didn't occur to me until after this first birthday that other challenges might follow....keeping that in mind....I was just as naive as the rest of the mothers out there...a first time Mom!  There was some differences, tho....and that will come out in my blog...in my experiences!