What to do for 3 yo with HFA?

iVillage Member
Registered: 03-27-2003
What to do for 3 yo with HFA?
6
Sun, 08-28-2005 - 10:50pm
I've mostly lurked on this board for several months and appreciate all your posts. I'm having a rough time and was hoping you guys might have some suggestions for me. I have a 3-year old with Asperger/HFA who received services through Early Intervention until last May. We started around 13 months and he got speech, OT, a special ed teacher 2x a week, and a social skills playgroup. We moved to another city right when he turned 3, but all his services would have ceased then anyway. He was doing quite well with all his services- biggest remaining issues were social and language pragmatics. His receptive language is age appropriate, but expressive is delayed, highly echolalic, and usually centers around trains. He has zero interest in peers, but does ask adults who visit to play trains with him. He responds well to his father and me and is very affectionate with his baby brother. However, he seldom responds when spoken to by others besides mom and dad and never when another kid speaks to him. He has little spontaneous pretend play other than that revolving around trains. He has no major behavioral problems- obeys me most of the time without fuss, we really only get tantrums if he's sick or overtired. He does have sensory issues and adaptive delays- has eaten the same 4 foods for the past 2 years, refuses to feed himself, won't drink from a cup. He seems quite intelligent, at least at memorization- knows all letters, numbers, colors, states, planets, etc.
He has a serious train obsession that has gotten much worse lately since he's been without services- he basically plays nothing but trains all day long. If I take his Thomas trains away, he will get out his Legos and make trains with them. If I take those away, he'll improvise a train and tracks out of Lincoln Logs, etc. 90% of his speech is about trains- either talking about trains he's seen or quoting from a Thomas book or video. The rest of his speech is requesting things he wants.
I do a lot of Floortime with him and can usually get him to play something besides trains. In fact, one day last week I said "OK, that's enough playing trains, let's play something else" and he actually picked up all the pieces of his train, put them in the box, and put the box away! He has other interests, but here lately the trains have taken over.
We are planning on implementing an RDI program with him and have already attended the initial seminar and purchased the books and video. We have scheduled an appointment with a consultant, but that's not for another 3 months.
We are currently having him evaluated by the local school district, mainly just to get the evaluation of where he stands right now. However, I'm not excited about any of the services they offer. Basically, all they would offer is a special ed preschool or possibly an integrated daycare. I've visited both and have ruled them out- I don't like the way the teachers in those classes treat the kids. Also, my son is so bright and well-behaved, I really don't think he needs all that strict structure anyway. I've been told that my son cannot get speech nor OT if he isn't enrolled in their preschool. I think RDI is going to help a lot, but I still think he needs speech and OT. However, I really don't want him in their preschool. If he were kindergarten age or older, he could go to a regular classroom with an aide, but apparently that's not an option in preschool. Does anyone have any suggestions on what I should do? I'm just really depressed right now, feeling like I'm not able to do anything to help him. Any advice much appreciated!
iVillage Member
Registered: 06-25-2003
Sun, 08-28-2005 - 11:17pm

hello and welcome,

I can't write my usual novel, bcause a back problem makes it difficult for me to type. There was one point in your post, which I really wanted to pick up on.

>>I've been told that my son cannot get speech nor OT if he isn't enrolled in their preschool.<<

I don't know what state you are in, but to my ears; that sounds like BS (pardon the French). We are in NYS and my DD got speech, OT and special ed in her regular ed preschool -all paid by the SD. (OK I had to pay for the private preschool!)

Your son's rights are protected by the Individuals With Disabilities Education Act (IDEA). Under that law, he is entitled to a Free and Apropriate Education in the Least Restrictive Environment (LRE); -the "most least" LRE being regular ed with regular kids. Under this law, the SD is supposed to custom build a program just for *him* They cannot try to shoehorn him into a standard or 'cookie cutter' offering. Forcing you to choose a special ed program is a violation of his rights to a LRE. You can fight this.

Check out the special ed board on iVillage, and check some websites: ideapractices is an "org" site, which has lots of good advice. Also wrightslaw is a dot com which may help.

Have to go. Good luck and please post more.


-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 07-24-2004
Sun, 08-28-2005 - 11:47pm

I am in a similar situation with my son; just turned 3, early start services ended, etc, etc. I live in California, and we have extended services for those with autism which include behavioral modification programs, parent training, respite, a social aide (when he's older) and they pay entrance fees for up to two autism seminars per parent per year. Check your social services to see what your state offers.

We got his first diagnosis from a developmental psychologist, then had a consultation with a neurologist who specializes in autism. He felt that school is very, very important for these kids, whether it be public or private. One of the biggest obstacles our kids have to overcome is learning how to socialize with other kids. The reality is that it will probably be hard to find a perfect fit for your son, unless you have unlimited funds to cover the expenses. My son started the special ed preschool in June, and it was HARD, for him and for me. He didn't want to go, he hated riding the bus and cried a lot! But through the 5 weeks of summer school, I noticed an improvement in his social skills, and he even talked about having a friend. You really should give the public school a chance, and the other services that the district can provide will help him so much in the long run. Get your IEP going and be an active, involved parent and the early intervention may make him able to go into a regular classroom for kindergarden.

The next most important thing you can do for your son is provide balance in his life. The neurologist said that basically for every hour of therapy/special ed these kids should have "normal time" (playdates with "average" children, family time, etc.). It was explained to me that the reason they aren't interested in playing with other kids is that it isn't fun for them. A typical child isn't taught how to play, it is done because it evokes pleasure. At the appropriate age, playing with other children increases the pleasure and they keep at it 'cause it's fun. Our kids have their own special set of rules that dicatate what fun is, and other children don't follow the rules, so therefore it is not fun. It is our job to teach our kids how to have fun with other kids. Be a play coach for your son to show him how to have fun in interactive play, then add another child to the mix for short periods of time. We started this with Nate and after a few weeks he can play for a short period of time with his younger brother (and me) before he gets frustrated.

It is an ever evolving process, and I am encouraged by the fact that I work with a gentleman (41 yo) who was recently diagnosed with as, and he has led a successful, if quirky, life thus far. There is hope for our kids and the early intervention is the key. Use all that is available to you.
Cathie

iVillage Member
Registered: 08-26-2005
Mon, 08-29-2005 - 12:02am
Your DS sounds exactly the same as mine. There was a point when I thought I would go insane if I heard the word train again. My son still plays mainly with trains but gradually over time has begun to have other interests. For a couple of months all he talked about revolved around trains but that has changed now and only happens when he is stressed. When he is stressed, like right now I'm trying to potty train him, he starts obsessing with the trains again. This past week he has called me "percy" more times than mom.He too has difficulty in the same areas as your DS and has recently become anxious about the strangest things. I have just started him on the yeast free diet. All I could get him to eat before were waffles, grilled cheese and pasta dishes. It was when my DD was born that my DS first became really obsessed with the trains. I just used his obsession to teach numbers,colors etc. My DS turns 3 in april and we plan to move also so we will be dealing with these issues as well.I hope it all goes well for you.
Teresa
iVillage Member
Registered: 10-24-2003
Mon, 08-29-2005 - 9:32am

Legally, your son should be able to get ST and OT without being in their preschool program.

Pat

Happiness is a conscious choice, not an automatic response. --

Avatar for kingalex
iVillage Member
Registered: 03-27-2003
Mon, 08-29-2005 - 2:52pm

There is no advice that I can think to give you that others have already provided; just want to let you know you're not alone! I have a now 8 year old HFA DS, who did not receive a diagnosis, (thus treatment), until he was about 3 1/2 years old. That was due to my own ignorance unfortunately, and I wish that I could do some of it all over again, although he's doing very well now. But you seem to be doing all the right things, and seem like a wonderful mom.

My DS went to the public school special ed preschool, as well as a private preschool, alternating days. While I think he 'enjoyed' the private preschool more, I think the special ed preschool really did a lot of good for him. I think the structure was extremely important for him.

We just moved to a new county within our state, and he started at a new school last week. I was TERRIBLY worried about the transition (not letting him know, of course!), but so far he loves his new school and his new resource teacher. He is in a regular classroom setting with about 50% time with a resource teacher, as well as OT and speech.

I know how frustrating the obsessive interests can be. For Alex it has always been cars. He could identify any car by make and model by the time he was 3. He will spend hours looking at car magazines (and drawing his own). He took a break from cars last year and was obsessed with street maps (made his own street atlases), but seems to be back to cars again. I find myself tuning him out sometimes, although that makes me feel guilty.

I wish you all the best with your DS; keep us posted!

Laurie

Laurie

iVillage Member
Registered: 03-27-2003
Tue, 08-30-2005 - 12:18am
Thanks for all your kind replies. BTW we do go to Kindermusik and to another preschool playgroup once a week. He enjoys both of those and at times does quite well, especially when he has the routine down. Of course, he never interacts with the other kids, but he's fairly adept at following the teacher's directions and occasionally even answering the teacher's questions. For awhile we tried library storytelling, but he has difficulty staying quiet during the stories, so we quit going there for now. He also used to go to a kids' gymmastics class, but they switched teachers at the end of the summer and he no longer liked it then (plus, it cost a fortune!)
As for playdates with other kids, they just don't seem to have any effect on him. We have been visiting his cousins regularly, once a week or so for 3 months, but are about ready to give up on that- he has never once responded to any overture made by the other child. He just does his own thing and completely ignores the other child. If we try to get him involved, e.g., in a game of "hide and seek", he may grudgingly agree to play, but then wanders off to play trains in the middle of the game. He just has no desire whatsoever in interacting with other kids (except his little brother, but he's only 8 months old!). However, he does like to play with other adults- that's why I think one-on-one speech and OT would be good for him. He could at least develop a relationship with another adult while working on some much-needed skills and maybe eventually he will develop a greater interest in peers. We're really hoping that RDI will help in that respect. How I hate having to wait 3 months to see our consultant!!
Regarding insurance to cover speech and OT, that's a good thought. Unfortunately, ours is really lousy and covers only 13 visits per year of speech and 13 of OT. Also, there are no providers for our HMO within our area- the nearest are over an hour away. I'll have to look into the rules for dealing with that situation. I may ask my husband to switch to a different insurance during open enrollment in November, if that gives us more options. If all else fails, I guess we could scrimp and save and pay for it ourselves, if we found the right provider.
How I miss Early Intervention!! We had such a great situation there, where the therapists came out to our house every day and he basically thought they were just his playmates and loved it! We even had one therapist providing some very loosely structured behavioral intervention (only 2 hours/week) and he loved her to death. We also had him in a NT preschool 2x per week, but that was pretty worthless- he never even looked at another kid the whole 2 years, though he did do well during circle time and with the teachers.
Well, thanks for reading this far and for all your support. Hopefully we'll come up with a better solution soon.