Losing my Bed

We have learned some things over the last few months. I took Sam to a new neurologist because his ups and downs over the course of a day were so frustrating and he stopped sleeping again. We attempted a new EEG - BIG FAIL. Sam will have to be sedated if he ever has another one. And since he will also have to be sedated if he ever has his teeth properly cleaned I am hoping we can just make a list of all the things that need to be done and coordinate doctors and dentists for one big party in the hospital. WHat are the chances that will work???

We tried different meds. MASSIVE FAILURE. We also tried cutting meds which was also a failure. Sam's behaviors got to the point where the school had to send me restraint paperwork because his tantrums were so bad they were afraid he might get hurt as they tried to stop him from hurting others or breaking things. He caused some pretty major destruction in the home as well. I starting reading about residential placement - and then hated myself.

I got some ABA hours covered by insurance. They were already a covered service but there were no in-network providers when I first looked into it. Now there is someone local and he gets taken to art and music therapy as well as special needs swimming. Sam doesn't give a hoot about art but it gets him out and since he like ot be on the go, it helps.

We went back to the main med Sam was on before only in a different form (tablet instead of liquid) and a once a day dosage instead of twice. Sma is a much happier camper. He is no less hyper and he still causes damage with his constant dropping and throwing but the aggrssive tantrums are down quite a bit.

In this whole adventure I lost my bed. Sam has been fixated on sleeping a chunk of the night in our bed. For the last couple of years I have done the "right" thing and put him back in his room each time he tries. Usually this meant a few sleepless nights putting him back again and again until he got the idea. Then a few weeks later I would have to repeat the process. THis is the dirty secret of behaviorism - beating the behavior is only temporary. You may never win the battle. WHen Sam was really bad in the fall, he smashed his closet door, broke it and then threw it out the door at me. He is not the incredible hulk - it was one of thoose Ikea frestanding wardrobes (his room has not build in closet). But that was the end of putting him back in his room. He realized his strength and now he does try to kick through his real door (and I think he could if he wanted to). His school wants me to strip his room of everything but a mattress so he can be contained in there but that idea assumes that there is room somewhere else in the house to put everything and there is not. Also, when he is worked up I cannot transport him to his room so it is a silly idea. Now Sam comes to out bed sometime between 11:30 and 12:30 and I go to his with the baby. Unless he has wet the bed and then we get the couch downstairs.

We are very glad to have a happier Sam back but we are still at a loss as to what to do next. His behaviors, while not aggressive, are still very destructive and impossible to manage despite the help of a team of home therapists.

The Value of a Life

Even those of us that have children who struggle to communicate KNOW that there is more going on in those heads than can be expressed. "Mentally Retarded" and "Intellectually Disabled" may be valid labels but they should not determine the worth of the child.

This raises some serious questions about who gets to determine the value of your child's life. I suggest you read it and pass it on/repost.

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/


If you feel moved to do something about it there are some suggestions here:

http://www.lovethatmax.com/2012/01/should-kids-with-disabilities-be-denied.html

Christmas

I tried to make sure a decent portion of the gifts I gave this year were handmade. People at work got ribbon scarves or ornaments. A good friend got knit fingerless gloves. These kimono sweatshirts were easy and fun to make. I got the pattern from Stitch magazine but I had to figure out the 3T size myself. I ended up giving these to the girls before the holidays because I couldn't wait to see if they fit.



Finding gifts for Sam is always tough. This tin of popcorn (kinda gross, I know) was a big hit and he was very excited. He seemed to know it was his. We also got him a set of bristle blocks but so far they haven't been as great as I had hoped. Maybe they will grow on him.

I knit Hannah a sweater that came out very well although it is too big at the moment. I also need to tighten up the button holes or put on new buttons.

I finally gave Hannah the quilt I made for her this summer. It is my first quilt and I can't wait to make another one.

I also made the girls matching jumper dresses but somehow I managed to forget to take a picture. They may not get worn much at the moment because Hannah is crawling like crazy and so dresses are not the best option for her. The style is very easy though and I expect it will still fit when she walks.

The girsl got stuff that was not handmade as well. Hannah has a nice selection of noisy rattles and an adorable pair of shoes. Maya also got shoes (she loves shoes. . . ) and a "big girl doll". It was not one of THOSE dolls that cost an arm and a leg (I remember when they were 68 dollars and I started a cat feeding business to save up for one). It was an imitation but it is just as good especially for a 3 year old. I made the doll some pajamas because Maya pointed out she had nothing to wear to bed!

I finally found someone selling the Oliver + S Bedtime Story Pajamas pattern on Esty so that is on the way. I have plenty of fabric just waiting to be used. I think that pattern is one I can actually make for Sam. Now for a day or two dedicated to sewing. . .

No such thing as a vacation/ no more travel

Sam's school made lots of promises back in early November. The most important were that they said they would help me negotiate respite care with DDD and they said they had "connections" and could send over a cheap carpenter to help me modify the home to create a couple of "safe spaces" for Sam when he is having a tantrum or being too destructive.

SOme posts I started but never got to finish explained the reasons why we need safe spaces - the short of it is Sam has had a few episodes in which he has hurt the girls and damaged the house. Much of it was due to a medication reaction (he is off the med) but some of it was just Sam realizing his own size and power. Once you know you can't unknow. . .

None of the promises came true. I suspect no one followed up with DDD but that is not my primary concern. I am wary of random respite care. I called various people and (politely) reminded them that because of their lack of action the girls and I were about to spend a week with Sam with no way to manage him if he gets worked up (other than perhaps to sit on him but i think he might be able to fight he way put from under me if I tried - I tried, by the way).

I believe my case manager must have been a little annoyed at the school because she also thought they would get this done. She got permission for our home program teachers to come over break ( I am surethey are thrilled but truthfully I don't care. After they do their time they get to go home to their typical families and not listen to the constant clatter of objects hitting the floor). The school also gave us 5 hours through their budget (Sam is basically in an out-of-district placement). I got some hours through health insurance and so while it is not perfect, I have put together a decent program for him. I hope I can do as well in the summer.

Last year we realized that we were no longer going to be able to travel for Christmas or Hanukah. Family members kindly say "we don't mind" and " we will help keep an eye on him" . but when their books get ripped and their stuff hits the floor, they mind. To truly keep an eye on Sam you must stay 2 steps behind him every waking minute and be ready to physically move him if he gets out of control.

So for some reason we decided to travel on xmas day. My sister lives just over 2 hrs away and next summer she and her family are moving to California ( my sadness on that one is a post in itself). The drive there was smooth. The visit was terrible. Mark and I took shifts following him trying to prevent disaster but neither one of us really relaxed or got to enjoy the people we were there to see. Mark and I were unhappy but most of all we realized how unfair it was to Sam. There was nothing he could do. In our house we may hate the dropping but when we can limit it to blocks and toys we live with it because there is no choice. Our floors are damaged and we wish we had good earplugs sometimes but it is what it is. In someone else's home Sam is over stimulated and he is basically not allowed to do anything because nothing he does is appropriate.

The ride back was scary. Early on we hit MAJOR traffic. We were at a near standstill for almost an hour and Sam FLIPPED out. He screamed at the top of his lungs, threw anything he could gets his hands on, kicked the front seat with all his strength, tried to escape his seatbelt, and tried to hurt Maya. Mark had a hunch the traffic was due to an accident so he got off at an exit that took us east and we took a chace that it would eventually hit a route that went north. After about 25 minute it did and we were ok. Sam loves car rides as long as we are moving.

So no more travel. For real this time. Unless I get a visit from the mini van fairy and I find a safety harness Sam ca't get out of. And I don't see those things appearing any time soon.

Where did the time go?

Time to knit a new hat.

Zoo Boo and the Storm

One of the things that went really well this month was a trip we took to an event at the local zoo. One weekend in October they decorate the zoo for Halloween and open the zoo at night (must buy tickets in advance). Kids walk around an "trick or treat" around the zoo. Local businesses and charities set up "trick or treat" tables at various locations around the zoo. I was determined to go this year - and I was determined to try to bring Sam . A friend was able to pick up tickets for me which was a huge factor in our being able to do this.

We went on a Friday night. Sam wore a sweatshirt with a glow in the dark skeleton printed on it. It is about as much costume as he can tolerate. He has been able to use it for the past 2 years and I am hoping to find something similar in a bigger size next year! Maya dressed up like (a fully clothed) Ariel from The Little Mermaid (he interest in being a Disney princess was much to my dismay - I know I could have vetoed the costume but I had a weak moment). Hannah wore a jacket with bear ears and pants with paws on the feet.

We got there a little early (note to self- go a little later next time) so we had to wait in line for the gate to open. Sam had a hard time but he got through it without stealing anyone's water bottle and smashing in on the ground. With the help of a pocket full of small treats, he managed to stay with me and not run away.

Sam walked around with us pretty well. He tried to steal and throw water bottles at every table and he didn't understand the concept of taking ONE piece of candy. Maya had a ball!! She was so excited to see some spooky (or as she says it, "booky") things.

We kept moving and made the rounds pretty quickly. We decided not to take any chances and left on a good note. I was on cloud nine the whole ride home because we actually did something all together.

I am very glad we went because the real Halloween was preceded by a huge nor'easter. The Saturday before we were hit with snow and ice that downed power lines and knocked the power out for days. We had a few dark cold nights but we were in better shape than many since we got power back for good by the tuesday followong the storm. The storm was prodigious. During the snow a bunch of us on our street stood outside to survey the snowfall and every few minutes we would hear a loud "crack" and another huge branch would fall. Maya got some good snow play time on Sunday. Sam had a number of fits because he couldn't flick the light switches or listen to music. Many schools closed for a few days due to power problems and tree damage. On the "real" Halloween I took the kids to a few houses but due to all the ice and branches on the ground we were limited.

The photos:

Zoo Boo

The snow:

Maya having fun:

Keeping the baby warm because we had no power/heat:

ISam

I started this post at 4 this morning after yet another sleepless night. For some reason, the magic cocktail that had Sam sleeping for the majority of the night stopped working a couple of days ago. But that is the subject of another post.

When I saw that Sam was number 19 on a list of 20 at the Mission Ipossible site, I really thought it would be a year or more before enough funds were raised to purchase his ipad. What has happened over the past few months has been amazing to watch.


I got an email from Ken, one of the people in charge of Mission Ipossible, earlier in the week letting me know that Sam's ipad was on the way. Since I am a teacher, I was home for the Jewish New Year and I was able to watch for the mail. Friday at 11, this box was on my front step. My mailman was a little lax with the signature required issue (although to be be fair he could probably hear the dog going nuts and me yelling at her so he knew I was home).





Is that the most neatly wrapped box you have ever seen?


I started to open it up while Sam was with one of his home therapists. I had to move from place to place as I opened because I knew Maya would go bananas when she realized what was inside. To my surprise, as I pulled apart the layers of bubble wrap, I found a bag of little toys and this little guy. That's a Dream Date Gonzo in case you can't tell (What are you trying to say, Ken? ).

Then I pulled out this:

Seriously, the wrapping job was amazing. Neat tape, perfect corners, no wrinkles. I distracted Sam when therapy was over by leaving the shipping box out. This is Sam balancing it on the edge of the table. He is gearing up to watch it drop again and again and again and again. . . . .

I left the bubble wrap on the floor to see how long it would take the kids to discover it.

30 seconds.

WHile they popped bubbles I took a look at this. I didn't try to get Sam to unwrap it. He CAN rip paper but he doesn't understand the meaning of a present and won't attend to the task.Over the course of the afternoon I set up the ipad with simple apps. One of Sam's home therapists has her own and so I already knew a few things that were worth getting. Maya ended up being the first to play with it because there was a crazy 3 kids yelling at me all at once moment and it gave her something to do for a while.

Sam didn't really "get" it when I showed him that we have our own ipad now. I felt a tiny twinge of jealousy each time I read an "i" post detailing a kid's enthusiasm over the new device. For us this is going to be a way to try to focus his attention and, hopefully, communicate. I would LOVE it if Sam could develop some recreation skills but I think it is unlikely. WHen I sit him down, Sam can do simple shape puzzles and discrete trial programs. We are working up to investing in the big guns - Proloquo2go. What is amazing is that the kid who had to be taught to point with his pointer finger in early intervention understood the concept of the touch screen right away.

Is this an instant game changer for Sam? No. But I see a lot of possibilities (Ipossibilities? Too corny?) The ipad is an amazing teaching tool that will allow us to work where ever we are without lugging tons of supplies. Hopefully, once we get speech software and Sam is able to hear the ipad speak for him he will find that motivating and appreciate it even more.

I am trying not to drip my wet hair on the ipad.

Here is Sam doing a shape puzzle ( no pieces to throw or eat!!!):

Here he is doing a discrete trial program for color identification (bonus-no flashcards for Sam to fold and chew):

My deep heartfelt thanks to the people at Mission Ipossible and the community of donors without whom this gift would not have been posisble.