Sensory Smart Superstar

This is my most recent post on my other blog www.sanitystitches.blogspot.com .  Since it relates to special needs I decided to re-post over here:

Sewing for Sam is something I have agonized over in previous posts. First of all, sewing for boys can be more difficult, at least when you are just starting out. You can't just whip up a simple skirt for your guy to try out your machine (well, of course you CAN, and I certainly wouldn't judge - but Sam isn't interested). In addition, Sam is PROFOUNDLY autistic. He is essentially non-verbal, he has major behavior issues, he has severe cognitive impairment (my youngest sailed past him cognitively at about 15 months), and he has sensory issues. The cognitive and sensory issues limit our clothing options.

I really haven't made him anything he will wear until now (I explained the pj fiasco in a previous post). So when I saw that the 3rd week on Project Run and Play requires making an outfit for a boy, I considered skipping this one. But then I decided to think hard about what might work and gave it a go. I am very pleased with the results!!!

For the pants, I started with the Oliver and S Bedtime Story pajama pants. The fabric is a dark olive fine-wale cord. Sam can only wear elastic waist pants because he cannot do buttons, zippers or drawstrings. I trimmed about 1/2 inch off the top of the pants and then I made the attached waistband wider (I used 2 inch elastic). I made the waistband out of a lighter olive green quilting cotton which was leftover from the Party Dress Remix I made in week one. I added a row of stitches around the top of the elastic to prevent the elastic shifting. I left off the leg bindings in that pattern and just made sure the pants were long enough to hem properly. I added a cargo pocket on one leg just for the look of it. Sam doesn't use pockets.


Sam doesn't like stiff collars and he isn't wild about shirts made with woven fabric so for the top I stared with the Flashback Skinny Tee pattern (designed for stretchy fabric). I sized up so it would be loose enough to wear over a tee or undershirt and I used a shirt he already has to adjust the sleeve length. I used a light to mid weight fleece. I wanted to add something interesting to the front. Sam doesn't have any hobbies for me to pull and image from. His only "activity" is throwing things around the house and jumping up and down and that doesn't really lend itself to a clothing theme! I decided a simple shape like a star would be a nice touch. I printed out a star from Microsoft Word and cut out it out of navy blue fabric - the same as what I was using for the cuffs and the neck. I sewed the star onto the front piece before assembling the shirt. I made a mock turtle neck for warmth (a full turtleneck would drive him nuts).

The big test was when Sam had to put everything on. He can't tolerate being measured so I was using his other clothes to figure out measurements. My big fears were that he would reject the outfit for some reason or the fit would be off. But. . . .SUCCESS

Then I had to get him to take pictures. I bribed him with candy (by the way, in the world of Autism, it isn't candy, it is a "reinforcer". That makes it better, right?) I was able to get a few shots but most were like the one above - hand flapping, jumping up and down, and generally being spastic.

Poking at the window:

I got him to show the waistband:

Then I called it quits and let him run off.

Illness

Sam was hit hard about a week and a half ago with a nasty bug.  I got it too but he was knocked out worse than I was.  He had fevers for about 10 days and he was sleeping 20+ hours a day.  It started on a Saturday and it appeared to be a 24 hr bug because SUnday he was fine.  Monday he went to school and I got a phone call saying he had dozed off, they were having trouble waking him and he seemed to be having seizure -like activity when they tried.  The nurse said he didn't appear to lose oxygen and she wasn't overly concerned.  Then she called back and said it happened again and she would need me to pick him up because she didn't want to put him on the bus.  For the next week he spiked fevers and slept.  While I certainly don't want Sam to be uncomfortable, I have to admit that his being ill had some advantages.  It allowed me to cuddle him and be with him without anything being thrown for a few days. 

Sam is back to normal today and as soon as we got home he started throwing things everywhere.  sigh.  We follow up with the neurologist tomorrow. 

End of the Year

The year comes to a close today and I can't help but wish I had more to report.  Despite a huge jump in therapy hours and medication changes, we had had very little progress for Sam.  Developmentally, my 21 month old has sailed past him. He has less language than when he was a toddler and he is more destructive and hyper than ever.  The only thing we have defeated is the really dangerous type of tantrum he was having - the kind in which he scratched up my arms or legs, threw things at me and the girls.  He comes close from time to time but he hasn't had a major blow up for a while.  That seems to be the result of meds. 

 In terms of other behaviors, nothing helps.  I go to meeting after meeting and plead my case for someone, ANYONE to offer up an innovative and intensive apporach but every so-called behaviorist gives me the same lame suggestions that I have been trying for years.  Have you tried removing the things he throws from the environment?  He throws anything and everything - books, toys, paper, shoes, spices, boxes of pasta, mail, pens, and so on.  Shall I remove everything from the house?  Have you tried aversives?  We tried what the school claimed was a very intensive behavior plan in which Sam received and aversive everytime he threw something ("non-preferred taste and visual screen were the main ones).  Sam found them aversive but they had no effect on whether he threw again 10 seconds later.  The suggestion now?  Put a lock on his bedroom door and keep him in there whenever a grown up cannot stay within arm's reach - and since I have three children and a husband who works weekends and usually gets home after dinner on weeknights that would be most of the time.  Seriously.  I am sad, angry and frustrated.

 I don't know what I expected really. I have read the behaviorism books too and I don't have any brilliant ideas.  We have tried all the usual interventions. Sam just tests the limits of behaviorism ( don't say that to a behaviorist, they don't like ot think they have limits).  The school says everything is fine, they are working on it, but he hasn't reached the point of "generalization" yet.  When I inquire further though I find that their idea of his doing "well" only exists because they pretty much never let him out of his "cubby" (each kid has a little area with two chairs and a table blocked off with bookshelves for ABA trials) and his aide is always within 3 feet of him.  That is worse than when he was  3 and 4. 

I am sad for Maya who aches to go on more playdates and daytrips like other kids her age but since most parents aren't doing "drop-offs" with 4 year olds these days I can't do it because I can't bring Sam.  I can't invite her friends here because Sam WILL throw things at them (with absolute certainty).  We try to maximize the time we have when he is out of the house but those hours are limited. 

My husband and I are tired- tired of holding on to hope that the next thing might improve quality of life over here just a little only to have it be as useless as everything else we have tried, tired of being hit with things, tired of seeing the girls get hit with things, tired of knowing we can't sit and eat a proper dinner together as a family, tired of knowing that tomorrow is going to be just as frustrating as today. 

Contrary to what the pity party above might suggest, the year wasn't all bad.  I was lucky enough to find a small UCC church nearby that has been wonderful for the girls.  Maya loves the music teacher and she got to be in her first Christmas pageant a couple of weeks ago.  I am hoping full time school next year will be great for her.  Hannah is a sweet and loving toddler who is talking up a storm (although her sleep habits need some serious help) Work is fine.  We have made some headway with some financial stuff.  I started another blog and I have been learning a lot abotu sewing and knitting from other bloggers (check it out over at www.sanitystitches.blogspot.com)

I am hoping as we head into 2013 that it will be different somehow.  I hope to meet innovative therapists and to find out about breakthroughs in medications.  Unlikely, I know, but you are supposed to be hopeful at the start of a new year, right?  It is as good a reason as any. 

Autism's Dirty Word

Sam has developed some aggression recently. Aggression is a word many of us hesitate to use in reference to our children.  Having it recorded as one of your child's "issues" can close some doors since not every program is equipped to deal with an aggressive child.  Also, especially with a kid like Sam, "aggressive" just doesn't seem to fit what I am trying to say.  To me, aggressive suggests that the person intends to cause hurt or harm to another.  It suggests more awareness than Sam has.  But, for lack of a better way to explain it, Sam has been aggressive. 

His episodes tend to be either in response to being told "no" or part of an OCD fit.  When he is told "no" to something he really wants (but just can't have) and he is in one of those moods, he throws thing hard at that ceiling, he hits me with the base of his palm, and he scratches.  If he is on the floor he goes for my legs and rakes his nails down.  If he is standing or on a couch he goes for my arm.  The picture shows the results of one morning tantrum.  The OCD fits are something new - he starts to scream and cry because the curtains are crooked, the pillows aren't right, the shoes are messed up - even if he/we fix what he wants it doesn't matter because he will just fixature on something else.  Sometimes he lashes out in those moments.  I cannot lift him up to his room to separate him from everyone when he gets like this.  I stay near him even though it means getting scratched because he is happy to go for the girls if I am not close enough. 

These episodes are not a constant thing.  They seem to come in waves and they are worse when he doesn't have school and his day is less "on the go".  So we are doing our best to keep him busy.

Broken Glass

Sam likes to drop things.  And throw things.  Pretty much all the time.  Usually he fixates on hard plastic objects or cardboard boxes but sometimes he selects dangerous things. Sam decided to punctuate his morning today by smashing one of Maya's snowglobes on the living room floor whiloe I made him breakfast.  Yes, I realize that the snowglobe should not have been where he could get it but at this point there are very few places he can't reach. 

Sam has a pretty intensive behavior plan for throwing/dropping at school and we are starting to bring it home during his home program sessions.  I am thinking about scanning it and posting it in case anyone wants to learn about behavior plans. 

A Nice Doctor

I met with a very nice doctor today.  I almost didn't go.  I got a call on Monday reminding me that Sam had an appointment with the developmental pediatrician.  I totally forgot about it and my first thought was to cancel it.  THere is really no role for a developmental ped. at this stage of the game.  We don't need a diagnosis and he doesn't handle meds.  It is one of those appointments that you have to make about 8 months in advance so about 8 months ago someone probably said to me, have you followed up with the developmental pediatrician?  and it seemed like a good idea at the time. 

I wanted to cancel because dragging a baby and Sam (Maya had camp) to one of the worst areas  (the hospital is surrounded by "gentleman's clubs") just made me want to vomit.  But I thought about it for a while and realized that if it went terribly, I just wouldn't go back.  If it went well I might leave with some suggestions. 

Sam was a complete nut, throwing things that whole time. Hannah was a doll.  The doctor was very kind.  He didn't offer any new information but he did give me some suggestions of psychiatrists who work with severely disabled kids.  None of them take my insurance, of course but I will at least call to find out their fees. 

And he said he was sorry things turned out this way.  He was the one who originally said he thought would turn out to be on the higher functioning end.  He didn't say it in a condescending way.  It was sincere and well, just kind.

He even called me when I got home because he thought of another specialist in another state I might want to call - also doesn't take my insurance but that fact that he continued to think about Sam was very nice. 

Losing teeth and losing faith in doctors

Sam lost another tooth yesterday.  I only found out becasue I happened to look in his mouth at the right angle.  He had no idea.  Or if he did, held no significance for him.  So far this makes 3 teeth out.  THe first he got a bit upset about, the second he must have swalloed in his sleep and then this one must have come out during the day.  I am sad that this developmental period means nothing to him but I am happy that it is not overly upsetting to him.  I suppose it could be worse.

After weekly follow up calls to the meurologist, I finally got a call back about 2 months after I sent the video of Sam foaming at the mouth.  The doctor still hadn't been able to open the video and said we woudl just talk about it at Sam's next appointment - in August.    AUGUST.  So he hasn't seen the video and has no idea if it is something serious and he says don't worry about it we will talk in August.  I would love to find a new neurologist but I really don't think there are any fantastic doctors out there for Autism.  I have list from various school with "parent recommendations" but this guy is on one of those lists so I don't know how much help they will be.