How did your child get diagnosed with Autism?

[graygables]

I took my DD to the pediatrician and explained in detail the issues she was having. She referred me to a neurologist who specializes in Aspergers and autistic spectrum disorders. The neurologist was the one who provided the DX. That was the easy part. The neuro recommended (in writing to DD's charter school's sped dept) that she receive speech therapy as well as OT, but getting the IEP team to concur has not happened. They all say she is doing fine b/c her grades are fine (although she still cannot read on level). They omit the fact that I, her teacher, LOVE her and do everything within my power to see that she is successful, including spending hours a day reading instruction to her that she should be able to read herself. Including tying her shoes b/c she can't and her frustration is intense. Including understanding her particular dialect because I've lived with her my whole life. If she were in a B&M public school, I shudder to think of the difficulties my DD would be having. Sorry for the vent, but the diagnosis was the easiest part of our journey.

 

[Nik's Mom]

I know, it is so hard. Sometimes I think about just home-schooling, but I know he needs the socialization. I quit my job at the end of June in order to spend more time working with him. And I have seen improvement. I find that I have to get more creative to teach him things. For example, the only way I can get him to pay attention when trying to teach him his colors, is to use colored dinosaurs. It's nice to know that I have a support group here on the DIS boards.

 

[graygables]

I know, it is so hard. Sometimes I think about just home-schooling, but I know he needs the socialization.

We are essentially home-schooling, I'm using a virtual charter school that is still considered "public" but we do all the teaching at home. It is a *wonderful* program. As a former teacher, in this day and age, I will drop off the face of the earth before I send my DDs to a public school.

I just did a search and there is one in California called Caliva (www.caliva.org) These are FREE of charge and you will be provided with a computer and a complete (excellent) curriculum. Here, we have certified teachers that supervise us and also plan lots of field trips (museums, chocolate factories . There are SO MANY ways of finding the dreaded "S" word (socialization) that everyone falls back on when complaining about homeschooling (as if learning to make obscene noises with ones armpit constitutes "socialization" ) . My DDs are in art classes, music classes, ice skating classes, ballet classes, church activities, all with other home/charter schooled children. There are swimming, basketball, baseball, soccer, you-name-it lessons available for homeschooled children here, too, but they are busy enough! They get *plenty* of interaction! There are also homeschool support groups everywhere that plan outings and play dates for the kids, too.

 

[Nik's Mom]

Thanks, Graygables. I added that link to my list of favorites. Do you know if it is common for special needs children to be home schooled? I know some people who home school, but their children aren't "special needs". I'm just curious. I agree about learning bad habits from other kids. My sons teachers are always raving about how polite Nikolas. He's the only one in the class who says please and thank you. I'm very proud of that! I am so glad that God has blessed me with such a wonderful son!

 

[graygables]

It is becoming more and more common b/c of the failures of the public schools to handle "normal" (whatever that is!LOL!) children, much less have the time, energy, and resources necessary to see that special needs children get the attention they need to be successful. I think that's why virtual charter schools are becoming so popular; you have the opportunity to "homeschool", but still have the services of the state available to you for the special ed part of things. It is a lot of work, but parents are their child's first teachers anyway. I hear people say all the time, "Oh, I could never do that!" but who taught your child to walk and talk? Who taught them to dress themselves? Who started a love of reading by reading to them every night before bed? Who taught them to brush their teeth or do the myriad of other things that they know how to do?

Public schools have established this mythos that teachers have some kind of secret knowledge or skills that only they know how to use to impart education to children and that's simply hogwash, to put it nicely (as a former teacher). It does not take a college education to be able to educate children, it does take love, patience, and some basic skills, which most parents possess. I bombed Algebra, but guess what? I can still teach my kids math. When my 16yo got to Algebra 2 that started to get beyond me, I use other resources to help her (even *more* socialization!!!)

 

[HayGan]

My DS4 was officially diagnosed as PDD-NOS when he was 3.5 years old. We first had concerns at around 2 yrs when he seemed to regress in his speech. Our ped. also wanted us to wait and after 2 months I forced him to give us a rx for a speech eval. The evaluator was the first to mention autism (although the word had been swirling around in my head.) We were then referred to the Children's Development Center at Children's hospital in Pittsburgh. We waited several months to see someone there and then she wanted to wait a few months after the first eval to officially diagnose him.

Well,she did diagnose him officially in October of 2003 and we began to receive wrap-around services in our home in December of 2003. In January 2004, his wrap-around agency started a program for high functioning kids whose primary goals were social related. he has made so much progress since he started in that program in March 2004.

Here in Pennsylvania, children with disabilities are eligible for medical assistance regardless of family income (I thought this was nationwide but I'm not sure.) His MA pays for all of his wrap-around services and his quarterly re-evaluations. Our private insurance (through my work) pays for his speech and OT therapies. I was shocked that our private insurance covered this. His MA would also cover this if my private did not.

Several of the local districts have started autism classrooms but I'm not sure if he will need that type of help once he reaches school. Many of the children here actually are bused from one district to another to attend clasesses in the specialized classrooms.

Every child is different. Go with you instincts. I hope you find someone soon who can send you in the right direction. If you find a professional who is familiar with autism spectrum disorders they should be able to provide you with some guidance in terms of resources available to you and your child.

Hugs to you!!

 

[Nik's Mom]

Thank you to everyone for your words of encouragement. I do have an update. My sons teachers are setting up an appointment for all of us to meet with the school psychologist again. The teachers have told me that there is a high functioning autistic program that he may qualify for. I've asked to see the class first. One of my sons teachers says that one of her concerns with putting Nikolas in an autistic class (even high functioning) is that they don't really work on social skills. She said she thinks he may be better off in the type of class that he is in now (special day class for mild learning disabilities) because he gets more social interaction with the kids. But at the same time, they think he will benefit from the "TEACCH" method used in teaching autistic children.
I'm going to keep an open mind at this meeting, and listen to what they have to say. If I feel that neither one of the programs are suitible for my son next year, I am considering home schooling.
Thank you to Graygables for referring me to that website. I am seriously considering it!

 

[mbb]

benefit from the "TEACCH" method used in teaching autistic children.

TEACCH is wonderful...without it, and the rest of the skilled professionals who helped us adapt it a little, and our son's teachers who are willing to use it's principles in the grade one class ...our famiily would be in a very different spot.

The wonderful part of it is, you probably do lots of it "instinctually" .

Good luck, and let us know

 

[babybunrab]

Nik's mom-

I do wonder why a classroom geared towards children with Autism and Asperger's is not focusing on social skills, since that is usually where higher functioning kids on the spectrum tend to fall apart (because they really, truly, don't get why these things are important). I've seen social skills training be SO successful with such children and really enhance their ability to interact with others. You may wish to consider (if social skills are an issue for you child) to ask at your meeting where it is he will be getting social skills training if it is not offered in the classroom.

Good luck at the meeting!

 

[Amaris]

We are essentially home-schooling, I'm using a virtual charter school that is still considered "public" but we do all the teaching at home. It is a *wonderful* program. As a former teacher, in this day and age, I will drop off the face of the earth before I send my DDs to a public school.

My dd8 has mixed expressive-receptive language delay . The school was completely ineffective in working with her. We fought tooth and nail for four years ( preschool, K, 1, and the beginning of 2) to get people trained and get her appropriate services. We live in one of the richest counties in our state and still could not get appropriate services. In January we withdrew her from school where she was a FULL year behind in reading and math.
Since being home, she has done a minimum of 7+ full hours of speech therapy a week ( rather than 1/2 hour a week at school) and her language has made RAPID gains. Additionally she is ON level in math and reading after 1 hour a day of reading and math instruction at home for five months. What is wrong with that picture? She had a 1:1 aide at school, 7 hours a day in a regular classroom for the last THREE years. I would never send my child back either.

 

[mrstbalt]

We had our now 3 1/2yr old with testing when she was 18mos old. We had a hearing test done. When that came back with negative results we were referred to Early Intervention (birth-3yrs) here in IL. Then she was evaluated by a team of 5 therapists and a few months later had a medical diagnosis, which both came back as PDD. We have stuck with her regular doctor, she does not like going but the staff is good. She will be entering again into the early education preschool this fall, the first few weeks was hard but it is for the best. Good Luck!

 

[cymomtx]

You might try going through CHOC (Childrens Hospital of Orange County). My son was diagnosed through the Learning Support Center at Texas childrens Hospital. I'm sure CHOC has some type of similar department.

 

[TiggerCate]

Have you tried your local university? They have a department at the University of Washington where our son was seen and confirmed as being autistic after seeing a specialist there.

 

[riu girl]

DD is mainstreamed but goes to a social skills class (within the school) twice per week for 30 minutes each time.
I wonder if you might want to consider this option. Each year there is a review meeting to talk about how she did and about class placement for the next year and each year I am told that they feel academically she is fine but due to her VERY weak social skills they want to keep her mainstreamed due to the fact that in the mainstream classroom DD will get the one on one and group peer interaction that she needs.

Not that I am disagreeing with homeschooling, I think that this is wonderful for the families that do this. And obviously you can provide your child with social interaction through play dates, church, lessons, other activities etc.

 

[nwdisgal]

Are you near a major university or medical center? I know that in Seattle (where we lived at the time DS was diagnosed) they had an excellent team of experts in Autism at both the local children's hospital and University of Washington.

The problem is there is usually a wait list to get in, so find the best facility that you can, close to your location and get your name on the list I know California has a high population of kids with autistic spectrum disorder, so I would imagine there would be some great resources there for diagnosis.

Also, most importantly, make sure your diagnosis is done by a team of experts. My son was diagnosed by a multifunctional team that included a Pediatric Neurodevelopment Specialist, a Speech Pathologist, his pediatrician and a Psychologist. He also went to an auditory specialist to rule out any hearing related problems.

Good luck!