Re: Yet another new member seeking advice!

[Guest guest]

Hi, Tara --

Oh, my gosh -- my mom and I were sitting in front of you at that meeting last week! Hello again!

I was just reading an article in The Autism Perspective Magazine today (great magazine, by the way!) written by a speech therapist. She said it is NEVER too late. NEVER. Most things you will see and read will focus on early intervention, because that is the optimal time to make the most impact on these issues. But, it's not impossible to start later. It may be a bit harder and take longer to acquire these skills, but it can be done.

Denial, as they say, is not just a river in Egypt! I sympathize with you, as I have seen cases of denial in my own extended family. Ultimately, ignoring the problem will not make it go away...it will only get worse. But, it's a hard thing to accept when your child has been diagnosed with Autism. I've read many things saying that you actually go through the stages of grief when your child is diagnosed...and one of those stages is denial. It sounds like that may be where every other adult except you is in your situation. If your boyfriend's children have all been diagnosed and see the doctor for yearly check-ups, I guess I would ask him why he disputes the diagnosis of his older children. When the children go for their check-ups, does he go with them? If not, maybe it would help him understand the situation if he did.

I'm guessing, since the boys have a diagnosis, that they are on IEPs at school (Individualized Education Plans). This is, in a nutshell, a set of goals and accommodations the school is going to make to help the child reach those goals. This document also outlines the services the school has agreed to provide -- occupational therapy (OT), speech therapy (ST or SLP), maybe even physical therapy (PT). It should also tell how often and how many minutes per week or month the child will receive those services. Does your boyfriend go to the IEP meetings? If not, perhaps he could notify the school that he would like to be a part of them. As their father, he is entitled to that. IEP meetings are where you could ask for more services for the children. Now, remember, if the school has gotten away with providing the absolute minimum, they will probably balk at being asked to provide more. If your boyfriend can request testing results on the children before the meeting, you may be able to use those scores to prove more services are warranted. I have found that you can catch more flies with honey than you can with vinegar -- at least that's how our school system works. I always look for a win-win situation, where both the school and I can get something we want. I don't look for win-lose situations. Over here, that kind of thinking puts the school on the defensive. For more help on school issues, IEPs, and how to go about getting the school to provide more services, I would recommend checking out this website: http://www.wrightslaw.com/. It will help you learn how to be an effective advocate for the children.

ABA is Applied Behavioral Analysis, and, again in a nutshell, it is a method used to help children with Autism learn. There are several methods, but ABA is the most popular and most studied. Many insurances, however, will not cover this type of therapy -- or many others, for that matter. The reasoning is that these services are supposed to be provided by the school system (at least that was my insurance company's excuse). Well, I'm sure we could all go on for days regarding the unfairness of that, but that could take forever! There are other types of methodologies used to teach children with Autism -- Floortime, TEACCH -- several different styles. Our therapists and school system use a combination of approaches that work best for my boys.

I think the first step is to try and help your boyfriend out of the denial stage. That's really the only way to help the boys. Denying there is a problem is only delaying their progress, which is ultimately hurting the boys. I really think that is how you need to start. I realize that may be easier said than done, but if you can do that, you can help your boyfriend find ways to help those boys.

I hope that helps. I also hope to see you at the next meeting in August!

--Suzanne Shaft

[Guest guest]

Tara,

While early intervention is important, it doesn't mean that

intervention done in later years won't work. In fact, I have been

told by many trained professionals that intervention at any age

(including adults) can be effective. I have seen studies showing

significant progress in individuals who started intensive therapy in

later years (the numbers are just fewer than those who started at an

earlier age).

My son's aide this summer was telling me about a 20-year-old man she

helped learn to communicate. After she was through working with him,

he was able to obtain a spot in a group home - something that was

impossible before intervention due to his aggressive nature.

The first thing you may want to do is look at the children's IEPs to

see what goals and objectives are being worked on for the kids. You

should also get a copy of each child's MFE (Multi-Factor Evaluation)

if one was completed by the school. This will give you some insight

into the deficits each child has. Once you have all this

information, you and your boyfriend can determine what other services

are needed for each child.

I hope this helps.

Thanks.

Debbie Z.

>

> Hi Everyone!

> I have reading all of your responses to Eileen and am in shock! I

attended

> my first ASGC meeting last Wednesday with my boyfriend of three

years. He

> has three children who fall on the spectrum. The youngest is

pretty

> severe. He is seven and can't talk although he makes sounds. His

day

> consists of sitting on the couch and rocking while rewinding the

beginning

> and end of blues clues.

>

> The only service he receives is OT every other week. During the

school year

> he receives speech once a week. After reading your responses to

Eileen, I

> am both angry and frustrated! Their biological mother has done

nothing to

> assist these children (we are currently seeking custody). My

boyfriend will

> not even admit the older two are on the spectrum. Dr. Wit. has

diagnosed

> them and sees them once a year more or less to chart their progress

(or lack

> of).

>

> I am not sure what I hope to gain from this e-mail, but I guess my

first

> question is are we too late? They are ages 7,9,12. Everything I

read

> focuses on early intervention. And if not, where do I start? And

what are

> all these letters being thrown around? What is ABA? Help!!!!!!!!!

>

> Sincerely,

> Tara

> --

> WOW! Homepage (http://www.wowway.com)

>