Sunday, November 3, 2013

Untitled

I could not think of an appropriate title for this post.  Our situation is turning into exactly what I feared for such a long time.  Sam's behaviors are increasingly dangerous and he has stalled/regressed in pretty much all skills.  In this past week alone Sam

  • Smashed a carton of milk on the floor
  •  Stayed up most of tuesday night, ended the all nighter by smashing glass all over the dining room resulting my going to work with my hands bandaged up,
  • clawed my face up when he was frustrated going to bed wednesday night leaving me with three nice scabs for work the next day
  • smacked me in the head a few times before bed pretty much every night
  • dropped a water pitcher on the floor then kicked me in the face as I tried to mop up the water before it spread everywhere
  • kicked my husband and me numerous times for fun and in anger
  • soaked the carpets in water he steals from the faucets and throws on the floors
  • covered the floors in food he takes, throws on the floors and them jumps on
  • threw a knife at my foot - luckily it hit me at an angle and I was wearing heavy socks
  • hit me with shoes, toys, cups, books, and pretty much anything else he has been able to get his hands on - he aims for my head and my feet
  • risked setting the kitchen on fire by throwing things at the stove when I was cooking
  • jumped so much he shook tiles off the bathroom wall
My mother came to visit yesterday and she was very upset at the situtation.  She said she feels we need to look into possible residential placement for him because it is becoming difficult to keep the girls safe.  It is something we have had in the back of our minds for a while now.  We are still hoping we can find a magical behaviorist or a beneficial medication that will allow Sam to stay with us ( I am not to hopeful on the behaviorist front since we have worked with some GREAT ones who haven't been able to help with this at all).  We are not giving up yet but we are getting close. 

If anyone out there has had success working with a nonverbal, hyperactive, severely behavioral child, please offer up your suggestions!

Tuesday, April 30, 2013

The one thing all three kids can happily do together.  It scares the you-know-what out of me, but they love it.

Saturday, April 13, 2013

Mortality

I have often wondered what autism would do to the length and quality of Sam's life.  He has behaviors that put him at risk for all kinds of dangers.  I never considered I might face a health crisis that could limit my ability to care for him.

A few weeks ago, as I pulled up to a light, my heart started pounding, my face got warm, and I went blind.  I shouted out, "I can't see" which took my two girls by surprise,  I knocked my glasses off my face (I am not really sure why) and I tried to remember how many cars were about to come through the light (I was making a left so I knew a had a little time before I had to move).  I fully expected that the next thing to happen would be my passing out or dying.  Luckily, my vision returned 10-15 seconds later.  I dropped the girls off, called out of work and had my husband take me to the emergency room.  All tests were normal and they sent me home.  Two days later I began having waves of faintness and a feeling that my vision might go again.  I went back to the ER.  CT scan was normal.

I saw a neurologist and a cardiologist.  Both agreed it sounds more heart related than anything else.  24 Holter monitor was normal.  Echocardiogram was normal.  Now I am on a 3 week event monitor.  I continue to have palpitations and waves of faintness.  basically I feel like crap.

I am guessing that this is somehow stress or sleep deprivation related but I really don't know.  I, of course, hope it is nothing serious.  But so far it hasn't let up or gone away.

I have thought a lot about what would happen if I weren't here.  I never prepared a plan for Sam's care. I honestly don't know where to start.

Monday, January 21, 2013

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.




Tuesday, January 15, 2013

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. 

Monday, December 31, 2012

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. 

Wednesday, September 26, 2012

Again and Again

We started a new supplement today based on this study
http://www.nature.com/news/amino-acid-deficiency-underlies-rare-form-of-autism-1.11375

Do I think Sam has this particular form of the disorder?  No but amino acids are a safe thing to add to his diet so we will give it a go. 

He also got a med increase today.  Should I have done these things on the same day?  No but is behaviors have us pretty desperate and and the thought of spacing things out makes me ill. 

I have been booted from my own bed - for good it seems.  Or at least until we fix up Sam's room so that there is nothing he can smash - including windows.  I doubt we are going to be there anytime soon.  Until then it isn't safe to "force" him to stay in his room. I can't remember if I ever posted about it but he has done some MAJOR damage when made to stay in his room at night in the past. 

And for some reason we have another dog. . .