Tuesday, March 31, 2009

I should feel lucky

i should feel lucky, after all it's only autism. at least he looks normal.

yes someone dared say that to me. I was insulted on so very many levels. yes I still have my child with me and I can hold him and kiss him and love him. he is alive and I am grateful. this thief, this wolf in sheep's clothing, this autism, will not physically take him away from me. he is right here in body.I can hug and kiss him. I am grateful. he has come a long way and I .AM. GRATEFUL
it takes away so much from him.it hurts me to watch him struggle.
to miss things that other kids love because it's too loud or too busy or too anything. add to that he is high functioning so he understand that he is missing something.
taking away his favorite foods and replacing them with barely passable substitutes so that he can function. it works but it is another sacrifice. another concession I wish i didn't have to make.
watching him slip away into his world when he does eat something he shouldn't. watching him cry for no discernible reason. scratch at his socks and pants because they hurt him just by being on his body. knowing he struggles through holding himself together at school only to fall apart completely when he gets home and didn't get the snack he thought he should.

please dont ever say its only autism. that hurts me. it's not ONLY autism. while it wont take him away physically I have no idea what the future holds for Sammy. Unless you live it you can't possibly understand the struggles he faces. the struggles I face as a mother, to see him as a child with a disability and not just a child who misbehaves.
please don't suggest to me that I need to discipline him more. don't think for a second I haven't tried it. I have it doesn't work. he doesn't care.
please don't tell me he needs a good beating. there is enough hitting in this house without me hitting him
please don't tell me I am too easy on him, hard on him, too strict or too soft. unless you live this life you can't possibly understand. if he melts down in public. don't stare at him. your dirty looks are not helpful. he may have autism but he also has feelings. I understand it may be quite a sight to see him screaming like the devil, but your advice isn't helping get me calm enough to deal with it. in fact I may just consider hitting you. please when he is throwing a fit don't tell him you will take him home, talk to him about Santa or the Easter bunny, or tell him the police will come. he doesn't care or understand that concept yet. he may look normal, but every minute of everyday demands are placed on him that he cant understand or handle. just because he looks normal doesn't mean he is.

please understand when you say those things, it hurts me.
it ISN'T only autism.
you really have no idea

lock it up

I don't have a lock on the medicine cabinet. I should have a lock, but Sam has never been aware enough to think to get the meds out. most of them taste like but anyway. I never thought it would be an issue. they were high up, they were out of reach of just about anyone under 9 feet tall.............. yup except for Sammy

he got into them in the 60seconds i was in the bathroom. he took the melatonin. the only one without the child proof cap. the only one he knows is his. he took a bunch. no clue how much. he fell asleep at 2 in the afternoon. i watched him breath for the rest of the day until he woke up at 9pm ready to start his day. you can only give one in a 24 hour period/ 2 if necessary. so we couldn't give him more. he was up until 3ish. mind you the night before Nate was up from 12-6 at night. hasn't been a fun few days here.

soccer saga

last season we played soccer. it was a first here. Tyler ,AJ and Sam all played their first year. Tyler was amazing. he ran and kicked and just all around was fantastic. I was amazed since he was never that into any other sports but he just loved soccer. AJ again is just good at everything it seems and has yet to find a sport he isn't phenomenal at. Sammy... well, it wasn't pretty. he hated it. i mean REALLY HATED it. every practice every game he hated it. i would physically dress him put him in the car and take him.
It was horrid. one day i left to get coffee. Dan stayed with him. Dan left to get a soda at the shack and Sammy took off for the lot. the poor parents with him chased him but he wanted to be spider man and jump on the moving cars.. it was a rough season. for months after the season ended he would wake up give me a sideways look and ask me (in a voice that made it quite clear that my eye balls were optional) "my have soccer today?" he hated every single second of it.
I wasn't going to sign him up I swear i wasn't going to. but... he heard me talking about it. he begged and pleaded that he wants to play soccer. yes WANTS to play soccer. in fact he has put on his uniform once a day for the two weeks since i mentioned it. so i signed him up. and Tyler. and AJ. dear God what was i thinking???this may get ugly.
anyone want to come see a game?

Monday, March 23, 2009

Sammy Sleeps Silly Sometimes Saying Silly Sentences

Two new issues have come up in the last few days or so. One Sam doesn't sleep a whole lot. Sometimes he does OK but then gets woken by a bad dream. sometimes I am just clueless as to why he decides 3 am is a fantastic time to get up and douse my kitchen in items from the cabinets. dill seed was by far the easiest to clean up... mustard not so much. The past few days he has woken around midnight. both times he has been shaking head to toe and then he pukes. Could he be having a seizure? I have no idea but now I am worried. Like I don't worry enough.
Another endearing habit Samuel has begun over the last two weeks (with increasing intensity) is silly talk. words that make no sense. just sounds put together over and over and over. such as "laluleela buleeklaaaa beeee" It sounds like he is talking another language.It has now taken over 60% of his speech throughout the day. I think it's probably just a phase. he has done this before where he gets a habit it gets worse until i feel like i am going to run away from home and then *poof* it's gone. Dan on the other hand is really worried he is going to stop talking. I get it, but I don't think that is going to happen (as I listen to him throwing the ball to his brother and screaming"throw it through the hole!") so should I worry? is it normal? I think I remember toddlers doing this as language development.

Tuesday, March 17, 2009

Sammy and his dream world

Dan is concerned. I can't blame him. Sammy has some pretty serious dreams, usually they involve much blood, death, and fire. Before anyone says it's from what he sees on T.V. we do not have cable. we only watch movies and nothing he has watched has anything close to that in it.

he woke this morning to tell us how Courtney died in a kitchen fire in the house and he tried to save her. he wasn't quite so eloquent but seriously. he dreams I die almost every night. sometimes I get hit by cars, sometimes he runs me over with cars. One night he was crying because he dreamed that he killed AJ with a toy. He has also woken us up to check things, like whether or not his brother has feet, since he dreamed he took Nate's feet away. he doesn't cry when I die in a dream though

we are a little freaked out by the viciousness in a lot of his dreams and we wonder

could he just be crazy on top of it? is it normal for spectrum kids to dream like this. I think I read somewhere that it might be. I also know I read that a lot of bi polar kids dream like this. so what gives?

any insight people. I'm hanging by a thread here

Sunday, March 15, 2009

LOOK! it has a penis.

Sammy is playing with a balloon. it's blue. he comes flying out into the living room and says LOOK IT HAS A PENIS. i squish it with my belly. of course Daniel and I are lost and have no clue what he is talking about until he squishes the balloon and a huge phallic appendage comes out of the end of the balloon. then he points it at me.


then he tells me it's a pear, then a shoot gun

but a penis???
now all of my children are making penis shaped balloons
then Sammy popped one. and looked stunned. I asked him if he was OK and he said . "yes,That scared me ha ha !" which I have now learned is a learned skill (thanks Shannon) he can generalize the phrases we have taught him and is able to use them properly

very similar to when we took him to down town Disney and he saw the T-Rex bones and said as loud as he could " I found his penis!"

perhaps we have an issue?

Friday, March 13, 2009

The land of Spinning pumpkins

Things have been very "autism" here. I dont know how else to say it. I haven't had any time to post things and am still getting caught up on all of my vacation posts. Sam has been like the energizer bunny these days. maybe it's spring coming , maybe it's my insanity, who knows.
he has quickly vacillated between one thing and another, Dr. Jekyll and Mr. Hyde if you will.

One minute he is saying " i call you sweetheart, I just love you more than camels" the next it's " i hate you, My want a new mommy" his newest choice phrase HOLY SHIT! he says it just to say mostly but once in a while he makes it make sense.

we had his IEP and they did give him full days and speech 30 minutes in/30 minutes out. He also has a socialization goal and such. I have a terrible fear he is going to fail at kindergarten. How do you fail at kindergarten you ask... well by the end of the year they want him to read, write, count (with 1-1 correspondence) from 1-20, recognize all his colors and shapes, and be able to pick his name out of a group of other names that start with S ...independently! he will get the colors, he may even get the name. but this poor boy cant count past 12 and with 1-1 number shape correspondence only gets to 6. and that took him 18 months to learn. he knows the letter S-A-M but he never puts them in order. again 22 months of home ABA.
so i dont see how it is even possible really. but he surprises me every day so who knows. we will try and if we fail we start over. no harm no foul?

Day two Vacation/Day three

Day two- rough trip really. We left later than I had wanted to and as a result Sam and Nate were not happy. Though I have to say Sammy did far better than I could have imagined.
We got to memere’s about 7:30. The last 30 minutes of the trip consisted of screaming from nate, at which Samuel would scream for him to stop screaming. Fun fun fun

Day Three- sam, louise and I went to the farmer’s market. Sammy had a loquat and LOVED it. He keeps talking about the circle fruit. We bought him a pint of strawberries and he ate them all as we walked through whole foods after.
Thankfully his barrack Obama/black man obsession seems to have faded. He hasn’t mentioned it once since we have been here.
Daniel and I went out with Michelle and Jay (who also have a child with autism) for valentine’s day. We went to raglan road. The food was amazing. I will post about that on the food site later though. All in all a great start to our vacation.

Day four- Church today. Sammy went off with Kayla to the child ministry program. He did very well and even tried to participate. I can’t even explain the way I feel to see him acting like the other children. To watch him focus and smile and play along side other kids in a way that seems so “normal” I can always see the things that make him different but hey they are there and that’s all there is too it.
We brought everyone to CiCi’s pizza. I made Sammy a GF pizza on a bagel and brought it with us. Packed some treats and sweets for him and he was really quite happy. He was so good the entire time we were there. I wonder if just the change of pace had made him so much easier. Then again the other shoe just may drop and kill us all. If it hit’s the fan, it will hit.the.fan. And then we are all screwed.