Happy for a friend, but

iVillage Member
Registered: 03-26-2003
Happy for a friend, but
4
Tue, 05-10-2005 - 5:18pm

A friend called today. We have known each other since college. A few years back (4-5 now) we ran into each other again at church. Her son (then 3) had just been diagnosed with mild autism. After that her older son was diagnosed AS/HFA too when he was 7ish. The boys are now 7 and 12 years old, plus she has 3 others so we have similar families. Her kids go to the same school as mine do, at least this year. Some redistricting for next year and they are moving to a homeschooling program.

She told me they just exited the younger one from his IEP as he nears the end of 2nd grade. They are considering exitting the older one, but he needs it more for social reasons but won't need it if he gets into the homeschool program they are on a wait list for (2 days in school -3 days at home). If the older one doesn't get homeschool he will go to the same program as cait.

I am happy for her but in the back of my mind is again the loss of early intervention for Mike. Last year when Mike was at this point in 2nd grade we were hearing that he wouldn't be able to handle general ed anymore and to start looking into special day classes. Her little guy started in preschool program at 3 with full days and ABA plus after school services at home. I agree, her guy is doing so great he is indecernable from his peers. He is easy going, has friends, etc. Even when Cait was 2nd we had just put her back on an IEP and was adding an aide to her class for the next year in 3rd. Can't help but wonder if there was something I have done wrong with both of them.

Done with pitty party. I had to put on my happy voice for her and be all chipper so I needed somewhere to vent a little. She invited me over in a couple mornings. Wants my input on what she is doing with older son. We often bounce ideas off each other. Oh well, what do ya do. Gotta go pick up kids and see what bad news today holds.

Renee

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iVillage Member
Registered: 12-24-2004
Tue, 05-10-2005 - 6:13pm

Renee,

Here's my 2 cents on this. Take it with a grain of salt. From all the studies I have read, and from what I know about brain development, I really think kids with PDD's are not all the same. One kid who is diagnosed HFA may have a very different brain from another with the same diagnosis. Mix this up with temperament and co-morbid conditions, and you can get very different prognoses.

I don't think you have done anything wrong or different from your friend. You both probably started with apples and oranges. KWIM? In 20 years or so we may know more about the specific etiologies and brain anatomies of all of these kids. I suspect there is going to be a lot of fine tuning of the DSM and treatments along with diagnostics.

What I have said so far sounds overly analytical. That was my initial response. Having said all this, I do know how you feel. I look at Moms who have other PDD-NOS kids (same diagnosis as Cassian), and I can't help thinking, "Am I doing all I can do for Cassian?" I mean, we can't afford the $4,000+ for an initial RDI workup and consultation, and I feel guilty about it. Part of me feels terrible that Cassian is one of 2 in his class who is being referred to a special autism program next year. In nearly every respect, he is more advanced than the kids I have seen in such classes (socially and intellectually), but his emotional control is a huge barrier to putting him in a regular Kindergarten class. Two of the women I know who are parents of kids in his class have children who are coming off the spectrum, but Cassian isn't. Suffice it to say, I know your pain, Hon.

Suzi

iVillage Member
Registered: 01-19-2005
Wed, 05-11-2005 - 11:07am

Hi Renee,

I just wanted to say I think it is natural to feel the way you do, even if you are happy for your friend. But I also wanted to say that you should try not second guess yourself. You are such a great mom. I have learned so much from you, just online, and even from here I can tell you are an incredible person!

I love your saying that, "if you've seen one autistic child, you've seen one autistic child," and I try to remember that when I get stuck on comparisons of my DS to other kids. Your children are unique and special and wonderful and you are doing the very best for them.

It's okay to feel bad sometimes, don't be so hard on yourself.

Sending some hugs your way!

Katherine

iVillage Member
Registered: 03-26-2003
Wed, 05-11-2005 - 11:46am

renee,

i can understand why you feel the way you do, but...

you are a great mom!! you do so much for your kids, you don't give yourself enough credit. i think you are amazing, and i can only hope that i can offer my kids as much as you do and have for yours.

valerie

~Valerie
iVillage Member
Registered: 03-26-2003
Wed, 05-11-2005 - 1:28pm

Well, thank you all for being there.

I guess it wasn't just that but I had a really poopie mommy autistic day yesterday. It was all the little stuff.

1. The thing with my friend.
2. Call from OT, need to set up Mike's IEP and he needs clinic OT again. His vestibular stuff is getting worse and he is regressing on the gains he made so is rocking and stuff in school.
3. Cait's IEP came home with the new front page noting a special day class, Team recomending her going outside her neighborhood school. Door to door transport (the short bus) More restrictive environment, etc. Cait hasn't been in a special day class since the beginning of K. I know, I know, it is the class I want. But seeing that on paper always is a realization of sorts that your kid is way different.
4. A new assessment plan with another assessment was sent home for Dave without explanation. Come to find out it was just for his transition IEP in a month. But it was one of those things.
5. The therapist called to try to cancel Cait's appointment for tomorrow and make up a day despite not making up the days she has missed with Mike. Yes I let her know my feelings on this and it was taken care of.

All in all by the end of the day I felt pretty darn defeated. However, I have a REALLY REALLY GOOOD thing from today!

I talked to Emily's teacher and she had reevaled Emily on a reading test. She progressed from beginning 1st grade level with lots of errors 2 months ago to now being at or above grade level in reading!!!!!!. She got a 99% on decoding and 100% on comprehension on an ending 1st grade level reading. WOOOHOOOO!!!!

She is getting some extra tutoring in school. We are working on vision processing at home and reading and she is suddenly reading and enjoying reading. I don't even have to have an SST meeting for her now. NO IEP FOR EMILY!!!!!!

Renee

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