Saturday, June 26, 2004

CAPD anyone?

Emma Jean has been diagnosed with a language disorder and apraxia. We are waiting for a reference from her ped. for an audiologist. Has anyone else gone though this routine?
We are beginning SI therapy with her this summer, hopefully a home program (it is expensive and I think Abby needs more formal intervention and I can do Beans' at home). We are also going to start Listening Therapy, which Abby needs as well, but we had been putting it off because it is expensive too (anyone see a trend here? LOL). Has anyone done this? Then come fall, she'll start some formal language enrichment therapy. We are also having the speech path come out and assess her current placement to see if it is appropriate for her. I think it meets all the criteria, but it is a larger classroom than she recommends. I personally do not believe the classroom that she thinks Emma Jean belongs in even exists, and if it does, I am sure it is a ton of dinero. I also need to start looking for a good little school for both of them for pre-K 4, since they will have some special requirements. I don't even know where to start.
Any input would be appreciated.

Monday, June 21, 2004

"Sleeps, Wakes, an Explosion: a Life Called Autism"

I thought this was such a good summary of a day in the life. Not every day day, of course.

Exerpts from:

He Sleeps, He Wakes, An explosion, a life called AUTISM
by: Leigh Stutesman

He sleeps.. he wakes up is sweet then something happens & WHAM!! POW!! BANG!! An explosion goes off & the meltdown of the volcanoes begins. What sets it off?? maybe he's thirsty, maybe someone is watching a show he doesn't want to watch. he can't go outside & get in the mud, or maybe just maybe nothing that you or I can see has set it off again. So, he yells & screams & cries & sometimes slams doors, or kicks & stomps & says hateful things. "I hate you mommy". "just go away". "I don't love you anymore" "I don't care!" but you stay strong & you don't take it personally. You know it's not your fault he's acting that way. he's autistic, and he sees the world in a different way then you or I.

He fights & gets mad then curls up in your arms and cuddles like an infant. His arms wrap around you and you rock, and rock and whisper songs in his ears. he says "I love you mommy" and you cry.. you try to hold back the tears but you cry.. you close your eyes & you pray to God that something will change & he won't always be this way.

You pray for him to have a successful life.. you pray he can eat like a normal 5 year old instead of like a toddler. you pray that one day he'll take a shower or a bath and actually get clean without your help. You pray he can go outside without worrying that the other kids will pick on him or wonder if he's getting into trouble.

You want just one, one day of normalcy. one day where your biggest concern is if he eats his dinner or brushes his teeth. one day where you don't have to wonder if his siblings are handling it okay or if the meltdowns and constant life revolving around their brother is effecting them and not in a good way.

Then when you're done praying you stand up, clean up from the day, and then watch him sleep. You see your angel sleeping and finally, at peace with the world. when he sleeps he's calm, and he's an angel. he's not a label or a headache or a child you just don't understand. he's your baby. your love.. your miracle.. and he just so happens to have a label of a puzzling disorder called "autism".

Friday, June 04, 2004

scheduled some appointments...

for beans:Emma Jean is going in for a full language and speech evaluation on Monday. I am looking forward, I think, to finding out where we stand and what we need to plan to do next. The speech path who is doing the evaluation is really nice and very thorough so I am confident in whatever she determines. I am also going to contact DISD and see about getting an eval. through them so that Emma Jean's subsequent therapy needs might be covered by the schools. We are still waiting to find out if our insurance will do anything. I am not hanging my hat on that though.
We had a very limited communication screen done a few weeks ago to see if she needed further referral and that is how I know that there are issues. I know that Beans is not going to come back okay, but to what degree, I have no idea. I am most concerned about Auditory Processing issues. Her articulation is pretty good. I think we are looking more at language deficits than anything else.
It was a real blow to Jimmy and I, truthfully. I am a little afraid of what this formal evaluation will reveal, but I know we have to do it.
and for abacus:
I also made an appointment with an allergist for Abby. I think we may be ready to investigate some of the biomedical alternatives out there that might help Abby. My main interest right now is getting her to stay asleep. It is still a battle and none of us can take it for much longer. I know there are medications available, and we are not ruling them out as an eventuality, but she is so little! I want to see what we can accomplish nutritionally first, with vitamins and minerals and possibly dietary changes. Anyway, that appointment isn't until the end of July, he is so booked up! I like the sound of this doctor because a) he is an MD and b) he is the father of an autistic boy who is graduationg from college this year (how cool is that?!?). We'll see what happens.
Does anyone know much about biomedical approaches or much about food allergies?

Parenthood is so much more difficult than I could have ever imagined.
  • International Day of Prayer for Autism & Asperger's Syndrome