This is what a six hour day of Kindergarten does to the Doodle.
It's called our 6:30pm Nap.
Open House Night
How is this mainstreaming my child? And whoever said I wanted my child mainstreamed? The Office of Education was the one that gave me a hard time when I told them I wanted to put the Doodle into a private school for autistic children only. I was told over and over what a bad idea that was because he would be missing out and not in "the least restrictive environment".
My point is stop telling me that is what you are doing and then doing something completely different.
I arrived at the Doodle's new Special Education Kindergarten Class and the first thing I noticed was that they had a big sign on the door that said "SPECIAL EDUCATION". This wasn't a handwritten sign just for open house night for the parents who might not otherwise have a hard time finding it--it is a permanent sign on the classroom alerting everyone that this is definitely the special ed classroom for the special kids. Because we wouldn't want them getting mixed up for a minute and thinking they're in a real classroom for regular kids. We need to label them and the classroom door.
As if I didn't know before I entered the classroom that I have a special boy in a special class. Thank goodness for that special sign on the door.
To Sleep or Not to Sleep; That is the Question
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| "Twilight" |
Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.
Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.
His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).
Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.
So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.
We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.
Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.
Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry.
I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.
A Boy Without a Bus
The Doodle started Kindergarten and it was a big day for him. We had received a confirmation letter from the (stupid) bus company that they would pick him up at 8:28am. A time which never made any sense to me since his school starts at 8:35 am. That gives them 7 minutes to get him on the bus, strap him into the special anti-escape jump seat, drive to the school, unstrap him and get him (and the other kids) off the bus and to his class in 7 minutes--hoping he's cooperating and there is no traffic and or red lights. So we got ready for school and since he loves to ride the bus and it's been a while, I really talked up the bus and got him jacked up that "OH BOY! THE BUS WAS COMING!!! He got excited and so we went outside to wait for the bus. After all, the first day of Kindergarten is pretty exciting for any child--and parents, right? So we went outside and waited. And waited. And waited. Anyone who knows the Doodle, knows he doesn't like to wait; hates it in fact. He's got no patience, so we've all learned not to tell him something until it's going to happen or he screams and freaks out. After waiting 15 minutes with no bus in sight, I had my mom go inside and call the bus company. They couldn't find the bus driver and didn't know what happened to her--because she wasn't answering the radio, but, they assured us that she was coming any minute. So we waited. And waited some more. Now, 25 minutes late--I decide to go inside and call them again because the Doodle is getting a little tired of the waiting part and his uber-gelled up Twilight hair is beginning to wilt in the morning fog. When I call, I get the same lame response...they still don't know where she is but she might be in downtown Sebastopol. WTF? Hmmm. Well that makes no sense since we live in a completely different city and now she is beyond being a little "late", now she is MIA. As if I'm not having enough anxiety that the Doodle is going to a brand new school, with a brand new teacher and no one on one support aid this year to watch out for him....and I'm worried and wanting to take Jimmy to his first day of school too so that he doesn't feel slighted--and hoping I'm back in time to see the Doodle onto the new bus on this very special day-- needless to say, I could have really done without the extra stress of wondering where the hell the bus was and if it was ever coming. So I get irritated because they can't tell me anything and by now the Doodle's screaming has subsided, and I wanted an explanation. No one had any answers. I tell them to forget it, I will just drive him myself--which I could have done all along if some one at the damn bus company would have just let me know. So he was 45 minutes late for his first day of school.
And, although, I may have no cute pictures of the Doodle getting on the bus on his first day of Kindergarten, I do have these cute pictures of the Doodle waiting for the (stupid) bus with his new Thomas the Train backpack.
P.S. Oh, you know I called that bus company back...six times in fact--demanding to talk to a supervisor-trying to get a straight answer as to how they possibly forgot to pick up my son for school and that the alleged 8:28am pick up time was not at all acceptable since I didn't want him being late to school every single day.
Eye Contact Speaks Volumes
For being autistic, this little Doodle has one of the most intense gazes I've ever seen. My friend was over the other day and said he communicates so intently with his eyes. And she's right. He may still be nonverbal, but that doesn't stop him from speaking to us with his eyes and gestures. He is masterful at letting us know exactly what he wants when he wants it. He'll take your hand and lead you or grab your face until you look at him and he knows that you get what it is he wants. If you happen to not understand him, he's tenacious and makes sure he can get you to figure it out whether it be with pictures, pointing or screaming if you're taking too long. No words necessary.
If he could talk he'd probably say: speech can be so overated.
A Doodle-Kind of Party
But he was fine. Really good actually. Only a couple of melt downs and issues with Doritos. He had a lovely Thomas the Train Birthday Cake and loved-loved-loved blowing out the candles...a couple of times. He would clap and get so excited! It was hard not to do it again. And again. People were nice and obliged the singing of that song a couple of times.
My favorite part of the party was watching the Doodle finally drink out of a big boy cup. He loves drinking out of a cup now and for the first time ever he is drinking juice! Now when he drinks out of a cup he wants the whole family to clap. He takes a drink, puts the cup down and claps and he gets pretty cranky if people aren't showing their support and clapping along. So he was drinking out of his cup and clapping for himself and the whole party was clapping with him and cheering him on. He was so happy and I was so proud. Then it dawned on me...he's FIVE and finally drinking out of a cup. I looked at a few of his little cousins faces and they looked confused as to why this would be such a big deal since they've been drinking out of a cup for years and no one ever made a big thing about it. But that's OK. When the Doodle hits a milestone, no matter how far behind he might be--it makes it that much more special for Us. And we celebrate. And we clap.
So I had a small gathering. I decided not to invite a big crowd of my friends with kids who would come out of pure obligation or even worse, dream up the perfect excuse as to why they couldn't make it. I kept it to just a few of his cousins and his only two "friends". I figured that the family and cousins would have to come; after all, they are legally bound to come since they are family; and then also his only two little friends from school (which I am friends with their mom's) and guess what? Neither showed up. Thankfully, the Doodle didn't miss them. He didn't know I invited them and it's not like his feelings got hurt; for me, one of the only positive things I've found so far about autism.
I tried not to be irritated, offended or take it personally...after all, I have a child with autism and both of these people have a five year old child with autism so who would understand more than me about not wanting to take my autistic child to a party of all places??? I get it. I completely get it.
But as I thought about it more and more--it bothered me more and more. If ever you were going to take an autistic child to a party, wouldn't you want to be in like-minded and similar company? Wouldn't you feel more than comfortable taking your child with his/her unique behaviors and characteristics associated with autism and feel accepted and understood at another autistic child's party? Wouldn't you, for once, feel like it was OK and you weren't being judged? That's the part that bothers me. If I can't count on my friends without children with special needs to understand what This is like...and I can't count on my friends with children of special needs to get it, who can I count on?
I think it's time for some new friends.
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