Introduction

[FLmommyof2]

I have been lurking for a while now. I am a stay at home mom of two. My 5 year old son was recently diagnosed by a psychologist with Asperger’s Syndrome/ADD. I don’t know where to start or how to begin, but I definitely could use some help and suggestions, so I will start at the beginning. I know there are many of you that are going through the same things I am going through. This is going to be long, but I figure if I am thorough, maybe someone else has also had the same experiences and can offer some suggestions. Our son has always been a difficult child. I remember as an infant there were times he would become frustrated and pull my hair as hard as he could. He has always been very aggressive with other children and even adults. I would take him to story time at the library and he would go up and hit or push other children for no reason. As he got older he continued to hit other children and even grownups for no reason at all. Some told me it was just a boy thing, or it was a phase, not to worry. When he was 2 ½ his little sister was born. He was very jealous and would pinch her for no reason. I could never leave them in the same room alone. I had to lock myself and the baby in the bathroom when I showered for fear that he would hurt her. About this time I started taking our son to Gymboree. While he seemed to enjoy it, he was still more aggressive than other children, had a hard time playing and I was constantly having to discipline him. I tried to enroll him into a preschool when he was three because I thought that the time away from mommy and his baby sister would be good for him and give him the chance to meet other children and have someone to play with. This was the eye-opener; I always thought that there was something different about our son, but I guess I was just hoping it was a phase and would go away. He was in school for two weeks and had to be removed. He was in a classroom of only eight children and he was very defiant with the teacher. He would hide under a table or in a cupboard during circle time; he would not participate in the activities. If he was disciplined he would act our by screaming at the top of his lungs and trying to bite and hit his teacher. I was called everyday by the administrator to come and get him because causing such disruption in the classroom. I was emotionally drained; I would pick him up from school and just cry and cry. I really thought I was going to have a nervous breakdown. I talked to my pediatrician and he recommended a children’s neurologist. We made an appointment, but the wait was about 3 months. I kept my son at home with me. After the experience we had with the preschool I was not going to put myself through that again. Even though there were some difficult times at home, they never got as bad as they did when he was in that school. I joined a MOM’s club in my area, so the children could have some play dates and get some socialization. When my son finally went to the children’s neurologist she said after 45 minutes that she suspected he had ADHD/ODD. She recommended us to see a child psychologist. We moved out of the area soon after this and I had to wait 90 days for our new insurance to kick in. I decided to make an appointment with another children’s neurologist and after seeing him for 45 minutes he said that he did not see anything neurologically wrong with my son and he thinks it is psychological and behavioral. He gave me a long list of psychiatrists in the area and we made an appointment. This was the worst appointment yet. My son began to act the way he did at school. The doctor asked him to pick up some toys in a very stern tone. He would not do it and it became very ugly from there. She held him down and told him, “Do you know where children who behave like this go? They have special places and they give shots. I know my son’s behavior was out of control, but I don’t feel that her comments were at all appropriate. She recommended a psychologist for behavior therapy. My husband and I are now doing some behavior therapy classes for parents. Meanwhile my son is seeing another psychologist one on one. This is the doctor that diagnosed him with Asperger’s/ADD. I am just starting to understand his disorder. My son has improved in some areas. He now loves to play with his sister, most of the times they are like best friends. He does really well with people he knows, our family, family friends and some of the neighbors that have children, but he is very awkward around people he does not know. If a grown up he does not know speaks to him he will turn his head away and act like he does not hear them. He will growl at people sometimes. He is less aggressive with children and adults, but sometimes it is still hard for him to play and make friends. He is getting a little better at playing with his toys and pretending. He does not do well if he is away from us or if he is in an uncomfortable or new environment. He does not show very much empathy for others. If he is playing with his sister and she takes something from him he will sometimes hit her, I will talk to him about what just happened and then I will send him to his room to think about his actions. He comes out and acts as if nothing ever happened. I have decided to home school him, but I am not sure if it is the right choice. I am enjoying it most of the time, and he is doing well, better than he would b doing at school. He knows just about every animal that exists and such detailed facts about each one. He is infatuated with animals and dinosaurs. These are actually the only toys he will play with or seems interested in. My son is receiving one on one therapy, I am not sure if this is helping or what they are actually doing. I am so confused. I think I am doing what is right for my child, but I know he probably could use some more time with other children, but I don’t want him to go to school and feel the way he felt before. I don’t want him to be labeled and teased. I don’t think I can handle it. His doctor has mentioned an evaluation to try to get him placed in a special education setting. I don’t know what to do. For those of you with children with Asperger’s does it get any better? What kinds of things do you do to socialize your children? Are they in school? The doctor’s want to get him in a school setting, so he will be socialized, but is that going to be good for him. We have been trying to go to church on and put him in the children’s church during the sermon, but this has been a flop. The last time we tried we got called in because he was getting aggressive with his teacher. We talked to him about it and he said that he did not want to go outside and she was telling him he had to go. I don’t see him functioning in a school setting. He just looses it when another adult tries to tell him to do something or not to do something. So now we are not able to go to church because they will not allow him in there if he behaves this way. I honestly don’t know what to do. I don’t know if I should see a different kind of doctor. I am starting to feel like I am going crazy!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Big Bad Kitty]

Hi and welcome to the board!

Poor little guy. Sounds like he's been through a lot. Shame on the doctor who held him down and threatened him. I'm glad to hear that there has been improvements.

There are lots of warrior mommies of Asperger kids on the site. I am not one of them, I just wanted to offer my support and hugs. I wanted to let you know that you are doing the right thing and that you are not alone (not by a longshot!). You found a soft place to land here and there will be other parents along soon.

A couple of suggestions, if you could create a signature for yourself (see the FAQ section to find out how) and if you would not mind but to break up your posts into paragraphs if they are going to be long. None of us mind the long posts, we appreciate the good information, but it is hard to read unless it is broken up.

One last thing, if you have not read "The Explosive Child", might I suggest you do so? Great book.

Again, welcome!

 

[SRL]

Hi Jolianna, Welcome to our forum!

Your list of docs who missed the diagnosis makes me so mad and is exactly why we're recommending to parents of young children to get a multidisciplinary evaluation right up front, including seeing a developmental pediatrician or a pediatric neuropsychologist. The pediatric neurologists by their own study were missing Autism Spectrum Disorders (ASD)'s about 50% of the time and there has been a huge push to for earlier and more thorough evaluation.

I have known many parents of kids with AS report that their children have done wonderfully in a specialized school setting, especially in the early years. Often that changes around middle school but I guess I would be inclined to check out what your district has available for your son should you decide to enroll him. I know that many of the hardest issues that I've dealt with at home have been non-issues at school because of difficult child responding to peer pressure or the setting. I've also seen that when I haven't been effective then at times there are staff members and/or kids who can. I guess I'd want to take advantage of everything that's out there. Academics are usually a breeze for the young AS child so that would be the least of my concerns right now. I'm sure you've read that often it becomes more difficult when academics become more advanced, especially in the areas of reading comprehension and those topics/tasks requiring more advanced social interpretations skills.

You need to do what's right for your family, but I wouldn't be afraid to check it out. You also might want to check in with your closest Autism Society and ask parents there what kind of experiences they've had. Our district does a great job with Autism Spectrum Disorders (ASD) kids--the label is actually an asset for getting services and a means to help staff members understand them better, not a weight hung around the child's neck forever. If you do go through the school district assessment process, you won't be required to accept any offered placements or services and it's of no cost so you'd really only be out time.

Good luck, keep us posted, and do pick up a copy of The Explosive Child.

 

[BusynMember]

Hi. Hon, you sound worn out! No wonder!
I have a son on the Spectrum. I highly recommend getting him into an early intervention preschool rather than a regular one. Does he have any delays? If so he may need Occupational Therapist (OT), PT, speech, social skills, the whole nine yards. My son is now fourteen and all that early intervention really helped him. He is a very peaceful child now who functions pretty well. He's still "quirky" but so what?
He also used to have horrible tantrums, and in the most embarrassing places!

 

[susiestar]

Sending very gentle hugs!!! So sorry you needed to find us, but glad you did.

My son is almost 16 and has Aspergers. He was very violent at many times. I will not kid you and say it was easy. It was NOT.

He now functions in high school with minimal supports. I see it as a success.

Your school will have an early intervention program. Take your son and see what they have. It is pretty much mandatory in most places to have this.

If you need help accessing services, check out the Special Education forum. I know many have found resources that were amazing. Our school district has a program through head start that is free and takes kids as young as 3. They work with them on all the autistic issues and other issues.

The psychologist who told him he would be sent away and get shots should have his license taken away. You NEVER threaten a child with a medical procedure. And anyway, threatening our children is useless.

Check out Tony Attwood's books on Amazon. He is pretty much the authority, as far as I know.

Good luck!

Susie

 

[FLmommyof2]

Thank you everyone for your support. Sometimes I don’t know how I get through the day. My son is can be very loving and is never physical with me, but he is a very negative child most days which brings me down. Sometimes I feel like I not giving daughter what she needs because so much of my time and energy goes to ds.

I made an appointment for my son through Child Find. I was told they will do a two hour evaluation and start from the beginning. They will see if he qualifies for special needs. I am a little nervous because I had no intention of putting him in public school. Even if I decide not to put in public Kindergarten next year I figure the evaluation can’t hurt.

Home schooling is going well, most of the time when he is corporative. This is not what I initially had in mind; but neither was a child that had Asperger’s. This is God’s plan for me and I will do what it takes to get through this.

My ds is doing one on one therapy with his psychologist, but I am wondering if this is actually benefiting him. I found another doctor that works with children with AS. She offers group therapy, where she would have about three children at one time. She is not on our insurance and it is kind of expensive, but I wondering if this would be a better type of therapy for him. Does anyone do anything like this?

 

[SRL]

I think I would wait to see what the SD has to offer before making a therapist change. Social skills groups/classes/goals are extremely important for young children with AS and I do think you want to include this as part of his early training, but since the SD is free you might want to at least hold off.

Here's a find a chapter map of the Autism Society of America. You might be able to find a local chapter nearby so you could hook up with some local parents to find out how their experiences have been with the SD.

http://www.autism-society.org/

 

[Mrs Smith]

That's one of the benefits of a specialized classroom-based preschool program - it should include integrated social skills training, Occupational Therapist (OT), PT, speech and individual accomodations and modifications for academics and life skills based on your child's unique needs. In other words, an IEP.

I can't say enough how beneficial early intervention was for my son. And the best thing is that the IEP will follow your child to the next program when he transitions to the school district. You'll save yourself and your son alot of pain by doing it now. Schedule a visit with the county run programs or the school district to see what they offer. Good luck!