My husband and I were worried about my son from about 15 months to 2 1/2. By 2 1/2 we finally decided to do something about it and call the Birth to Three Program. We were worried about his speech delays and obessive behavior, head banging, sleep problems, etc. We weren't really thinking autistic, but my mom (grandma) had been saying he's autistic since about 12 months.
Now we get to the point of a referral to the school district and his IEP. They weren't ready to say "Autism" since he hasn't been seen by a doctor. They just put him in that category... Developmental Delay, Speech Delay.. (?) But they made a note that he has many of the traits of children with autism, minus a diagnosis.
Now, they gave me the number of a Doctor that specializes in diagnosing autism, etc, but she takes about 6 to 8 months to give an appointment. (Seems like a good area to go into for med students, huh?)
With all of this in mind, they didn't really push me to get a diagnosis, but then they mentioned that he might be eligible for paid health insurance (no cost to me) if he has this diagnosis, and he might be eligible for...disability (?)
My husband and I don't want our son to be autistic (obviously) but it was actually kind of a relief to hear all of this (and extremely sad too of course) because we could not figure out why we cannot teach him and why he is so hard to deal with. Plus, being told by other people constantly that we are not good parents (i.e. people that see you in a store, child crying, head banging, etc. that don't have a clue what you are going through).
My son likes harry potter and nemo. He says harry and nemo alot. He cannot say "milk" or "cup" but he can say "cheese". He can say "Am I, U?" but not "How are you?" He can also say things like, "Mom, where are u? Dad, where are you?" "Shower" "Shoes" "Outside" "Walk" "Happy Happy Happy" and his favorite "sa" or "wind gardium sa" for wingardium leviosa (harry potter fans will understand this). oh, and he says "banket" "billow" at bed time... and... a few other things. He just turned 3.
My question is... Did watching movies like harry and nemo make him autistic (as his grandma seems to think) -- our theory was that, since he used to throw such a terror at nighttime, a little movie watching helped us all get some sleep.
Next question is... Do I want the autism diagnosis? We don't have insurance, do we want to get it before the diagnosis or just pay for the appointment?
Final question is... The school district set up my son for school five days per week with additional therapy of approx. 75 min. per week... This seems like alot, does it indicate that he is pretty severe? They told me he'd be in classes with kids that have alot more skills than he does.
Our son is really gifted with mechanical things and counting, he counts everything. He just can't talk and has problems with sensory development...he gets to obsessed with certain toys/objects, has problems with transitions, and banging/chewing/throwing. He cannot label most things. If he wants something, like milk, he will take the gallon out of the fridge and give it to me, or hand me an empty cup and say, "close" or "cose", something like that.
Now I am also worried about my 15 mo old, will he have autism too? He's so much like his brother, but he is also different, he will look me in the eyes and label his face (nose, eyes, etc.) so ... I'm hoping that means he's going to be okay. He copies his brother so much, that I'm confused.
I will try to put answers in your message:
[QUOTE=harrypottersmom]
My question is... Did watching movies like harry and nemo make him autistic (as his grandma seems to think) -- our theory was that, since he used to throw such a terror at nighttime, a little movie watching helped us all get some sleep.
[/QUOTE]
I seriously doubt it. Autism has been around longer than TV or movies. Longer than Harry Potter or Nemo, I think. But I do not know what causes it either, so I cannot rule it out.
[QUOTE=harrypottersmom]
Next question is... Do I want the autism diagnosis? We don't have insurance, do we want to get it before the diagnosis or just pay for the appointment?
[/QUOTE]
You probably don't want it but you might need it --- to get the necessary services. And the necessary services work better when started young. I don't think that our insurance covered the diagnosis. In our state, kids below 3 get evaluations paid for by the state. Over three is paid by the state under federal law, the same law that gives you the IEP. As part of the evaluations that gave you the IEP, you ought to have gotten the autism evaluation. Ask for one in writing since in some states this triggers a timeline for replying that might get faster response than 6 to 8 months. In my state its 60 days. Off hand you seem to be learning something else about autism --- no one wants to pay for treating it.
[QUOTE=harrypottersmom]
Final question is... The school district set up my son for school five days per week with additional therapy of approx. 75 min. per week... This seems like alot, does it indicate that he is pretty severe? They told me he'd be in classes with kids that have alot more skills than he does.
[/QUOTE]
My son gets preschool 5 hours/week, 20 hours/week of Applied Behavior Analysis (an autism treatment), 2 X 20 minutes of speech and 20 minutes of occupational therapy, and he not that badly off. I'm not sure how that compares since you did not say what the school is doing.
[QUOTE=harrypottersmom]
Our son is really gifted with mechanical things and counting, he counts everything. He just can't talk and has problems with sensory development...he gets to obsessed with certain toys/objects, has problems with transitions, and banging/chewing/throwing. He cannot label most things. If he wants something, like milk, he will take the gallon out of the fridge and give it to me, or hand me an empty cup and say, "close" or "cose", something like that.
[/QUOTE]
My autistic son did all these things at that age, like obsessing over numbers. But it really is a question of how much, and so you need an evaluation. I can't tell from an e-mail. The screening tools for autism take 10-15 minutes with someone who knows the child, and a real diagnosis might take 1/2 a day.
[QUOTE=harrypottersmom]
Now I am also worried about my 15 mo old, will he have autism too? He's so much like his brother, but he is also different, he will look me in the eyes and label his face (nose, eyes, etc.) so ... I'm hoping that means he's going to be okay. He copies his brother so much, that I'm confused.
[/QUOTE]
Statistically speaking, I think that the odds are slightly higher. But it is not certain. When you get the evaluation for the older child, you might get some idea what to look for in the younger. But copying someone else (if that is really what is going on) is not a strong point for kids on the spectrum, so I would lean towards saying you are probably right.
Dad2Luke&Alan (both on the spectrum)
Question 1 -- NO!!!! Harry Potter did not make him autistic. Othewise millions and millions and millions more children would be autistic. Autism is hard wired into the brain at birth. It is a neurobiological disorder. It's like saying boiling water in a teapot caused it to have a spout.
Question 2 -- Medical insurance for kids with disabilities varies from state to state. Certainly, having a medically diagnosed developmental disability is one of the qualifiers in most states. But the majority of states have family income criteria, too. However, since this varies from state to state you should call your local Social Security office to find out. Education law says that a medical diagnosis is not necessary. Autism, educationally is not the same thing as a medical diagnosis of autism. Sometimes it is, but often the medical diagnosis is not autism, but any pervasive developmental disorder qualifies under the educational label of autism. ONly in NY State does having that label give more benefits in school. And, in NY, you can't get that label until K anyway.
Question 3 -- No. The school plan sounds good.
Question 4 -- Yes, your 15 mo is at higher risk of autism or some other Developmental Disability. That doesn't mean he has one, but you ought to get him checked out closely. It's always better to find out early and get EI. He will be bumped to the top of the diagnostic waiting list. Think of it this way. If you had a highly allergic first child and your second child started sneezing a lot, wouldn't you be mroe concerned about taking him to an allergist than another mother who has no allergies in the family would be?
This will all start to make sense, especially if you stick around here.
Just to add to what advice you got already:)
Try to find a developmental pediatrician in your area that is private...they dont take insurance but you can get your answers within weeks instead of months..
Early intervention is key to success for your son. Good luck:)
[QUOTE=harrypottersmom]Now, they gave me the number of a Doctor that specializes in diagnosing autism, etc, but she takes about 6 to 8 months to give an appointment. (Seems like a good area to go into for med students, huh?)
[/QUOTE]
This is very common. It took us 6 months to see the specialists for our DD's eval. Even in the city, people are waiting for months to get an appt.
[QUOTE=harrypottersmom]
With all of this in mind, they didn't really push me to get a diagnosis, but then they mentioned that he might be eligible for paid health insurance (no cost to me) if he has this diagnosis, and he might be eligible for...disability (?)
[/QUOTE]
The official dx is going to be very important for his education in the future. It will help justify what services he will need. Will he need an aide, additional speech, OT, PT, etc. Home services, etc. Autistic children do regularly qualify for disability benefits, it depends on your annual income.
[QUOTE=harrypottersmom]
My husband and I don't want our son to be autistic (obviously) but it was actually kind of a relief to hear all of this (and extremely sad too of course) because we could not figure out why we cannot teach him and why he is so hard to deal with. Plus, being told by other people constantly that we are not good parents (i.e. people that see you in a store, child crying, head banging, etc. that don't have a clue what you are going through).
[/QUOTE]
I understand, we felt the same way. But, a dx doesn't change who your child is. They are still your little baby and nothing ever changes that feeling. Having the dx can really help when it comes to behavior therapy. Alot of the negative behaviors can be corrected with the right behavioral therapist. It helps answer alot of questions of why. You have to learn to have a thick skin, its really hard!!! I am sensitive when people make negative remarks about my child's behaviors and odd things she does. I just tell myself, they are a jerk, let it pass.
[QUOTE=harrypottersmom]
My question is... Did watching movies like harry and nemo make him autistic (as his grandma seems to think) -- our theory was that, since he used to throw such a terror at nighttime, a little movie watching helped us all get some sleep.
[/QUOTE]
There are lots of theories right now, nothing truly in concrete. Until then, I wouldn't give it a second thought. Remember, alot of times grandparents and other relatives have a hard time accepting the dx. They look to blame it on someone and the parents are in front of the line for that. Try not to take it to heart. I do find my child is drawn to cartoons. She can relate in fantasy land and has a hard time relating in the here and now. It seems to be her escape where she is totally relaxed with no cares at all.
[QUOTE=harrypottersmom]
Next question is... Do I want the autism diagnosis? We don't have insurance, do we want to get it before the diagnosis or just pay for the appointment?
[/QUOTE]
I don't know what state you are in, but most states have health insurance set up for kids with disabilities. We are in Ca and have insurance. But we found out my DD can get medical to cover what our insurance doesn't cover because she has a disability. I am currently looking into it, that will make alot of her medical expenses alot easier to handle. Your county office for medi-cal or whaever its called in your state should be able to help you.
[QUOTE=harrypottersmom]
Final question is... The school district set up my son for school five days per week with additional therapy of approx. 75 min. per week... This seems like alot, does it indicate that he is pretty severe? They told me he'd be in classes with kids that have alot more skills than he does.
[/QUOTE]
You are so lucky! Alot of us have to fight for those minutes! Early intervention is a great program. Alot of kids really benefit and by the time they are kindergarten age, have outgrown some of their issues because they received therapy so early. Count your blessings with this!
[QUOTE=harrypottersmom]
Our son is really gifted with mechanical things and counting, he counts everything. He just can't talk and has problems with sensory development...he gets to obsessed with certain toys/objects, has problems with transitions, and banging/chewing/throwing. He cannot label most things. If he wants something, like milk, he will take the gallon out of the fridge and give it to me, or hand me an empty cup and say, "close" or "cose", something like that.
[/QUOTE]
Those are very typical traits of autism. Early Intervention can help that. My daughter did those things too when she was young.
[QUOTE=harrypottersmom]
Now I am also worried about my 15 mo old, will he have autism too? He's so much like his brother, but he is also different, he will look me in the eyes and label his face (nose, eyes, etc.) so ... I'm hoping that means he's going to be okay. He copies his brother so much, that I'm confused.
[/QUOTE]
While autism can affect siblings because most think there is a genetic component, its not always the case. My 2nd child is typical, no developmental delays at all. He did copy his big sister and that started to become an issue. But once we put him in pre-school and he was around other kids with no issues, he really blossomed. Maybe getting your baby into a playgroup to interact with peers would be a good thing. You can also have your child tested by the early intervention team (they are called different things in different states) and see what they say. The EI teacher here was telling me recently that alot of kids displaying dev. delays go to EI and lose those delays in just a year or two. She said its an amazing change, so there is alot of hope!
Good luck to you. You have a tough road ahead of you. It can be really overwhelming at times. Be sure to take a breath and take a break when you need to. DOn't let negative people influence your decisions, that can weigh too heavily on a parent with a plate that is already full.
Thank you so much for the replies. I will have to get moving on the insurance aspect of this right away. We have sent in a questionaire to maybe get an appointment for the dx. I will definately come back to the boards. what is ISM? my son loves trains ,his world doesnt revolve around it but we live in new york and he loves riding on trains as our way of transportation, big collection of thomas and geotrax trains, videos,movies, tv shows. he could be sick in bed and just gets up if he see's a train on the tv.
Hi there. I read your posting and wanted to share some info with you. I am the mother of a 15 yr. old daughter with PDD/NOS. She also has been diagnosed with many other things: Tourette's, ADHD, OCD and Anxiety Disorder. She was also very premature and not expected to survive. When she was two years old she was found to be missing part of her cerebellum (the 4th ventricle into the brain is not covered and this compromises motor control over the entire body). This has NOT been an easy road to travel for our family and this is our only child. After extensive research, taking our child to every single doctor and then some available, years of therapy.....etc. etc. etc. we have realized that Autism is a genetic/metabolic disorder. Your child does not get this from watching TV programs or anything remotely related to that. There are many different forms of Autism which makes it very difficult to diagnose. Most physicians are at a loss when it comes to diagnoses. We took our daughter to several neurologists and several psychiatrists for her diagnosis. The key to helping these kids is THERAPY - THERAPY - THERAPY. If you can get this - terrific. I recommend OT and Speech. If your son has sensory problems, I also recommend Sensory Integration treatment. Some people don't believe that this works, but trust me it does. There are also many things you can do at home and really work with him. We have worked with our child since she was 6 mos. old. The community at large is not going to help you. They can try to make suggestions, but in fact, no one really knows how to help you. My husband and I went to the Option Institute in Sheffield Massachusetts when our daughter was 2 yrs. old. They have a method for working with your autistic child that we have found really works. Our daughter was non-verbal, not walking, terrible behaviors, head banging, spinning, finger flicking etc. Within 3 mos. she was walking, talking and now has improved so much, you would not believe that this was the same child. The reason your son likes Harry Potter so much is because this is his ISM.....autism produces isms - that is, what that child or autistic person really really likes. I cannot explain it to you.....our daughter has been obsessed since the age of 3 with The Little Mermaid. She just loves it so much, that is all she wants to think about and talk about. Your son, from the way you described him, sounds very high functioning. Please feel free to reply back to me.....I will try to help you as much as I can - been doing this for so long now. I still have my moments of confusion too!!!!!!
Susan
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