Started the evaluation process... long and rambly

[dantesmama]

I called the autism center today to get the ball rolling with my son. He will be 5 on Saturday, and I've suspected he's on the spectrum since he was 2. For three years, people have been telling me he's fine. That he was just being a normal 2yo boy, a normal 3yo boy, a normal 4yo boy. But I can't ignore the fact that this seems to be much more than a "he'll grow out of it" thing. He can't make friends. He can barely even interact with other people. He hops, flaps his hands, jumps, twirls, and kicks. He's incredibly clumsy. He seems off in his own world much of the time. He can't sustain a normal conversation or maintain eye contact in a normal fashion. He takes everything literally and doesn't understand humor beyond slapstick stuff. He spends hours daily talking about sharks and drawing sharks over and over again. He has never said "I love you." He also has a freaky-good memory, a fantastic imagination, is well-behaved, and plays well with his little brothers and his sole friend (my friend's daughter - they've known each other since birth, have grown up together, and she's the only child he will play with).

I am feeling overwhelmed and nervous. I am worried about what a diagnosis will mean - if he is on the spectrum (he seems very Aspie-ish), what does his future hold? My heart breaks to see him struggle. I watch him in a group of kids and he's just hopping around stimming, oblivious to what everyone else is doing, and I see the way people are starting to look at him, and I get that heavy, sick feeling in my gut... On the other hand, I'm also illogically worried that maybe he's fine and it's just me (and homeschooling) that's screwing him up. For years, certain family members have been telling me that I shouldn't keep him home. That he needed to go to preschool, pre-K, kindergarten, so he could make friends and learn to act like the other kids (because, y'know, I keep him locked up at home away from other children all the time. ) Whenever I've brought up my concerns, I've been made to feel like I'm just looking for an excuse. So part of me is afraid that that's what I'm going to hear from the doctors.

I don't know what the purpose of this post is - maybe I just needed to get it all out there. I'm kind of a mess of emotions right now. Input and/or hugs are appreciated!

[kathteach]

It's a hard call to make, and you should be proud of yourself for calling, no matter what the outcome. It is so scary. Keep us updated. This is a great group of mothers here and you will be supported.

[Linda on the move]

My 13 year old DD is on the spectrum. She had new and very wonderful full eval last year and I have great information about her, but I still have no way of knowing what the future holds. I think that part of having a SN child is making peace with the not knowing.

The homeschool VS school thing is very loaded, and there are moms of kids on the spectrum here who make different choices. If you only want homeschooling support, then I think you should double post on the homeschool board.

We used to homeschool and we no longer do. Homeschooling doesn't *cause* autism, but in our situation homeschooling was very isolating and meant that no one out side our family was trying to connect with my DD. She attended public school for a year and now attends are really wonderful alternative school that is far better for her than homeschooling and somewhat better for her than public school.

What is best for your child really depends on the options where you live. Homeschooling isn't the same everywhere, and school options aren't the same everywhere. And you only have to figure out a year at a time.

Having dealt with a variety of specialist and teachers, no professional has EVER implied that my DDs struggles are in any way due to parenting choices. That's more for in-laws and neighbors.

One of my favorite books is Quirky Kids by Klass. It talks about sensory stuff, Asperger's, PDD, etc., the eval process, what it's like to raise a kid who is different etc.

[dantesmama]

Thanks for the replies! Linda, I have no idea what we're going to be doing as far as education long-term. We are definitely doing K at home this year, since our district only has full-day K and there is no way my DS could handle that at not-quite-5 years old. I love homeschooling but am open to starting him in 1st grade next year if it seems that would be better for him. (Although he is already doing 1st grade level work right now, so who knows.)

I will be lurking on this forum!

[Julia Rose]

What Linda on the move said.

If your DS gets a diagnosis, he will be able to receive the services he qualifies for. This is true whether he is public schooled or home schooled. You are doing a good thing for your little man, and labels are just words that get the services in place. As an Aspie wrote: "The autistic condition is the human condition."

I see you're in Western NYS -- I don't know if you have contacted the Kirch Center at Strong/Golisano Hospital in Rochester, but they are one of the best in the northeast.

Good luck, hugs, and many blessings.

[Emmeline II]

labels are just words that get the services in place.

This should be the subtitle of this board .

He hops, flaps his hands, jumps, twirls, and kicks. He's incredibly clumsy. He seems off in his own world much of the time. He can't sustain a normal conversation or maintain eye contact in a normal fashion. He takes everything literally and doesn't understand humor beyond slapstick stuff. He spends hours daily talking about sharks and drawing sharks over and over again. He has never said "I love you." He also has a freaky-good memory, a fantastic imagination, is well-behaved, and plays well with his little brothers and his sole friend (my friend's daughter - they've known each other since birth, have grown up together, and she's the only child he will play with).

A lot of is similar to my ds. At first I thought taking everything literally was just due to his age, but my younger dd is not the same way. He prefers slapstick humor and the old Tom&Jerry cartoons have him rolling. He is obsessed with Ben 10 (draws his own Ben 10 books and omitrix badges), Captain Underpants, legos, lego X-box, and Star Wars.

On the other hand, he wasn't anything approaching well-behaved until he started taking Concerta for ADHD, though we think he is Asperger's as well. The Concerta helped with the hops, flaps his hands, jumps, twirls, kicks, and "rolling" his shoulders constantly, and he is now redirectable in school. Also, he does say "love you" and usually lets me hug and kiss on him; overall he is only a little less affectionate than his sister.

When we got his first official diagnosis it was "yeah!" at first, then "oh, crap ." But not having a label wouldn't change what was going on with ds and now people (like the school-new one since last year) have to pay attention. And now we can say "well, the DOCTOR says..."

He has a 504 plan at school, a good teacher and special ed department. His teacher nominated him for the gifted program and I hoped he gets a spot in the lego robotics club; it is the one thing at school that he is really interested in.

[Linda on the move]

I wrote a novel

Originally Posted by dantesmama

there is no way my DS could handle that at not-quite-5 years old.

Your little guy is turning 5 this October? Am I reading that right? In many states, he wouldn't even be old enough for K. My DD has an October birthday and is one of the older kids for her grade, rather than the younger. When she switched schools this year, they gave us the option of bumping her up but we didn't do it because we feel a longer period of time in a more protected environment is better before launching.

anyway....

The "he couldn't handle it" thing is very slippery. Part of the reason that your child couldn't handle it may be due to his sn, and not his maturity. Accommodations *might* be the answer at some point rather than keeping him home forever. I'm not saying now or next year or anything, but waiting until he seems ready to handle it might mean waiting forever, and there are other options than keeping him forever.

None the less, he's really little right now!

There is a lot of rhetoric in the homeschooling community about how when kids are ready, it will be easy for them. It may be true for neuro-typical kids, but it isn't true for kids on the spectrum.

[ I love homeschooling but am open to starting him in 1st grade next year if it seems that would be better for him. (Although he is already doing 1st grade level work right now, so who knows.)

every child with autism is different, but the thing that I had wished that I understood when my DD was younger was that her academic abilities were not the determiner to what her options would be in life, but rather her ability to deal with the outside worlds and with people outside our family.

Autism can be thought of as self isolation, and finding people who work at connecting with a child with autism is more important, IMHO, than how well they read. It's doesn't have to be in school, but it needs to be somewhere.

Originally Posted by Emmeline II

When we got his first official diagnosis it was "yeah!" at first, then "oh, crap ."

I think this might be a universal reaction!

He has a 504 plan at school, a good teacher and special ed department. His teacher nominated him for the gifted program and I hoped he gets a spot in the lego robotics club; it is the one thing at school that he is really interested in.

I hope he gets it too! Last year at public school, they put my DD on the student counsel and gave her jobs to do. It was way cool for her.

My experience as a homeschooler was that I was alone trying to figure out what worked for her, and after she started school, she had a whole team of people helping figure out what works for her.

But everyone's situation is different. If we lived near family or had a close church community that was helpful with her it might have been different.

[applecider]

I just wanted to give a because I am right there with you, the beginning of our journey. But at the end of my rope dealing with this by myself. I hope we can both get some answers.

[dantesmama]

Originally Posted by Julia Rose

What Linda on the move said.

If your DS gets a diagnosis, he will be able to receive the services he qualifies for. This is true whether he is public schooled or home schooled. You are doing a good thing for your little man, and labels are just words that get the services in place. As an Aspie wrote: "The autistic condition is the human condition."

I see you're in Western NYS -- I don't know if you have contacted the Kirch Center at Strong/Golisano Hospital in Rochester, but they are one of the best in the northeast.

Good luck, hugs, and many blessings.

Thank you! We are going to the Children's Guild Autism Center at Children's Hospital in Buffalo, but I will file away the Kirch Center in my brain. In regards to labels, I think a major part of the reason I haven't pursued an eval for him already is that I was afraid of losing my son and gaining an ASD child. I know, makes no sense. My middle child was severely speech delayed and I got help for him, without ever mentally labeling him as a "speech-delayed child", but the permanance of ASD scared me, I think.

Originally Posted by Emmeline II

This should be the subtitle of this board .

A lot of is similar to my ds. At first I thought taking everything literally was just due to his age, but my younger dd is not the same way. He prefers slapstick humor and the old Tom&Jerry cartoons have him rolling. He is obsessed with Ben 10 (draws his own Ben 10 books and omitrix badges), Captain Underpants, legos, lego X-box, and Star Wars.

On the other hand, he wasn't anything approaching well-behaved until he started taking Concerta for ADHD, though we think he is Asperger's as well. The Concerta helped with the hops, flaps his hands, jumps, twirls, kicks, and "rolling" his shoulders constantly, and he is now redirectable in school. Also, he does say "love you" and usually lets me hug and kiss on him; overall he is only a little less affectionate than his sister.

When we got his first official diagnosis it was "yeah!" at first, then "oh, crap ." But not having a label wouldn't change what was going on with ds and now people (like the school-new one since last year) have to pay attention. And now we can say "well, the DOCTOR says..."

He has a 504 plan at school, a good teacher and special ed department. His teacher nominated him for the gifted program and I hoped he gets a spot in the lego robotics club; it is the one thing at school that he is really interested in.

Thanks for posting this! DS loves the old Tom & Jerry cartoons too. Having a younger child has made me see just how "different" his development has been. I had been chalking up a lot of things to his age and general quirkiness.

Originally Posted by Linda on the move

I wrote a novel



Your little guy is turning 5 this October? Am I reading that right? In many states, he wouldn't even be old enough for K. My DD has an October birthday and is one of the older kids for her grade, rather than the younger. When she switched schools this year, they gave us the option of bumping her up but we didn't do it because we feel a longer period of time in a more protected environment is better before launching.

anyway....

The "he couldn't handle it" thing is very slippery. Part of the reason that your child couldn't handle it may be due to his sn, and not his maturity. Accommodations *might* be the answer at some point rather than keeping him home forever. I'm not saying now or next year or anything, but waiting until he seems ready to handle it might mean waiting forever, and there are other options than keeping him forever.

None the less, he's really little right now!

There is a lot of rhetoric in the homeschooling community about how when kids are ready, it will be easy for them. It may be true for neuro-typical kids, but it isn't true for kids on the spectrum.



every child with autism is different, but the thing that I had wished that I understood when my DD was younger was that her academic abilities were not the determiner to what her options would be in life, but rather her ability to deal with the outside worlds and with people outside our family.

Autism can be thought of as self isolation, and finding people who work at connecting with a child with autism is more important, IMHO, than how well they read. It's doesn't have to be in school, but it needs to be somewhere.



I think this might be a universal reaction!



I hope he gets it too! Last year at public school, they put my DD on the student counsel and gave her jobs to do. It was way cool for her.

My experience as a homeschooler was that I was alone trying to figure out what worked for her, and after she started school, she had a whole team of people helping figure out what works for her.

But everyone's situation is different. If we lived near family or had a close church community that was helpful with her it might have been different.

Yes, he is turning 5 tomorrow. We have a Dec 1st cutoff here. I'm aware that in most places he wouldn't be eligible for K yet, and that's a big reason why he's home with me. SN or not, I wouldn't send him to school for 6 hours a day at age 4. On the other hand, I am considering sending him for first grade precisely for the reasons you mentioned. On the other OTHER hand, enrolling him concerns me because I suspect he may be twice exceptional, and we live in a very small, mediocre school district that I worry may not be equipped to serve him developmentally AND academically. But I'm getting ahead of myself here and I suppose we'll cross that bridge when we come to it.
I appreciate your input!

Originally Posted by cody'smomma

I just wanted to give a because I am right there with you, the beginning of our journey. But at the end of my rope dealing with this by myself. I hope we can both get some answers.

I just commented on your thread! It's kind of relieving to make that call, isn't it?


I talked to MIL again about DS (she's been the most vocal about insisting he is fine) and I found out that she actually had DH evaluated for autism when he was about DS's age! The doctors told her that he was just gifted and was bored by other children, but this was before doctors knew much about the higher-functioning end of the spectrum. And DH is one quirky guy. This info is interesting because I have long suspected that I could be an undiagnosed Aspie, and was also ID'd as gifted as a child... so in that light, the issues DS is having kind of make sense.

[applecider]

dante'smom - That's interesting, we have similar histories. I'm pretty sure DPs sister is on the high functioning end of autism but of course never diagnosed. I definitely have sensory issues (which is probably why I'm so sensitive to DSs issues) and both DP and I were in the gifted programs at our schools. Plus, DP once told me he thinks in pictures, which I had never heard before. So it makes some sense that DS is who he is.

I'm right there with you in that until now, I did just think DS was different. Now that I'm seeing him around other children on a regular basis, I realize that he could (and me!) use some extra help, maybe even a label if that 's what it takes to understand him and stop getting so mad that he won't change! My DS is also academically up there, he's been reading books for a bit now and we too live in a pretty crappy school district. Tiny town, not many resources but so far, the teachers are pretty cool. The state I'm in is pretty progressive so I'm sure they will be open to suggestions.

About your MIL, I had a similar conversation with my mother the other day. She always insisted there was nothing the matter with DS. Her best friend is a retired special ed teacher who also insisted there was nothing wrong, but we saw her the other day and I guess she had mentioned to my mom that DS did have some red flags to her. Jeez, that's what I've been trying to tell you all along! She finally realized that maybe there was something.

Anyway, sorry for the novel! I just thought it interesting that our situations are so alike. Here's hoping we get answers real soon and can start helping our sons!