Read and respond

Read this story and then PLEASE send an email. What if your child were denied the right to use his legs in school? Or maybe forced to tie her arm behind her back? What if my son were not allowed to use his augmentation communication device (which would be like putting a gag on a typical child. )

http://www.lovethatmax.com/2012/03/school-bans-kid-with-cerebral-palsy.html

Hannah was born a year ago tomorrow. She nearly came six weeks earlier when I broke my arm in three places and almost went into early labor. I exhaled when the doctor said, "It's a girl!" As you can see from the picture I still had a cast on my arm. Getting her in and out of the hospital bassinet was not always easy! She nursed right away without issue and she cried when they took her away from me to clean her up and check her out.

Here she is wearing the booties I knit her. They were the best!

She loves to watch her sister.

Big bright blue eyes.

Lucky for us there are 3 spots on the swingset!
The ipad is a big hit in our house. Sam is learning Proloquo2go, Maya loves games, and Hannah like to try to copy both of them. I think this would make a great poster for Apple.


Teething.

Big smile.

We still spend a lot of time like this. Early on we used the Moby wrap and now we use the Ergo carrier. She can't settle down to nap with the constant Sam noise so when she looks like she is fading, I put her in the carrier to nap.


Happy Birthday!

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.