Asperger's Syndrome - Palo Cedro,CA

Updated on January 30, 2008
D.C. asks from Palo Cedro, CA
7 answers

We have a 5 year old son that may have Asperger's Syndrome & we're looking for help & support. We are getting him tested next week to be sure. He has a very good, gentle heart but every day is a struggle at this point. Even his teacher (who is wonderful) says she prays for us all the time because he's such a hand full. We also have 2-1/2 year old girl who is learning some really bad behavior from her brother & who, we feel, is getting "gipped" because we're so tired & frustrated most of the time dealing with our son's stuff that we don't have the energy we should or give her the attention she deserve's.

We love him so much but at times the thought of having to deal with another outburst or many of the other things he does is overwhelming. He's honestly, wearing my husband & I out.

Just looking for help & support. We're very open to idea's & trying new things. I read soooo many books & go to seminar's all the time on child development, discipliine, & behavior.

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L.C.

answers from Sacramento on

Hi Diane. I understand everything you are saying. My hubby and I are the proud parents of 6 adopted kids, all special needs - the oldest two have Asperger's among many other diagnosies. My hubby is not a young man at 51 y.o. and our youngest is 17 months. It is exhausting at times.

Have you been in contact with your local Family Resource Center? They will know about any support groups and goings on in your area. They will also know about parenting classes and some have parent mentors who are parents with a child like yours for you to talk with. In case you haven't, go to http://www.frcnca.org/directory.html and click on your county. You can find the phone number from there. Is your Regional Center doing the assessment? If not have you asked for a Regional Center referral? If he does qualify for Regional Center, then you will have opportunities - behaviorist, parenting classes, respite, summer camp, extra-curricular activities, etc. In our county they pay for special needs karate lessons.

There is also a great book called Hitchhiking through Asperger's Syndrome by Lise Pyles. I highly recommend you reading it. Good luck. Write to me if you just need to "talk". A little info about me and my family. We have been foster parents for 10 years and have dealt with all kinds of disabilities. Some of the diagnosies my own kids have are Asperger's, Fetal Alcohol Syndrome, ADHD, PTSD, seizures, chronic migraines, Downs, metabolic disorder, g-tube fed. If you need to bounce ideas of of someone or just need to chat, please feel free to write because I do understand your frustrations.

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R.M.

answers from San Francisco on

Hi There,
I'm so sorry to hear the news. I have a pretty wild little boy that the teachers are always wanting to try to get me to diagnose for them, they are suspecting ADHD. so, not as stressful as aspergers but I totally understand how one wild child can really put stress on the entire family.
anyhow, I'm not that aware of aspergers but I do have a friend who's child has been diagnosed with that and they have their child on a very strict diet. no wheat, preservatives, peanuts,..the list goes on and on! they say that the diet worked wonders. There are many books out there with dietary ideas. Good luck to you and the family.

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D.E.

answers from Chico on

Hi D.,
I am so sorry to hear what a hard time you are having. I am not up on Asperger's but will pray for you and your family.

D. E

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D.W.

answers from San Francisco on

My son as diagnosed as having mild Aspergers when he was 7 and, honestly, having a name and something to research acted like a key. Once you understand what makes your child tick, you will be able to mitigate the situations that cause the outbursts, and life becomes SO much easier.

Children on the spectrum almost always have sensory issues, and the sooner you can tune into your son's the easier life will be. My son can't handle noise, it stresses him out, and stress results in outbursts. He also NEEDS touch, constant physical sensory input, so chewing on a shirt or a straw or a carrot calms him down and helps him focus. However, these things are unique to each child and you may find that your child calms to music, instead of stresses, or calms to something visual, like staring at a brick wall (one adult at an Asperger's forum I frequent described how he used to see patterns in this one brick wall near his grandparent's house, and could stare at it for hours re-drawing patterns in his mind. He posted pictures on walls outlining the types of designs he saw. It was a fascinating look into a mind that is very different from mine).

Think about some of the things your son is drawn to do that you may have been prohibiting. For my son, one such behavior is pacing. It turns out it is a very common pattern, for Aspie's to pace. My son literally walks from one side of the room to the other, climbing up on the furniture, banging the wall, and then reversing. For years, we tried to stop it, but after reading on the Asperger's forum how important this can be to self-calming and focus, we decided to just let him. And, well, it WORKS for him. Other Aspies talk about loving to swing, or jumping on a trampoline; they seem to all have some physical movement that helps them focus their mind and calm themselves. See if you can spot what your son is drawn to, and if he doesn't have anything in particular, see if you can help him find something acceptable to you that will fulfill this function.

Asperger's comes with gifts and burdens. Once you understand how to mitigate the burdens, the gifts start to shine more clearly. My son is an inventor, he has the most amazing imagination. He is a fabulous story teller and actor, gifted at math and science, and blew everyone away at my father's funeral by bravely and beautifully reading from the Bible in front of the church. But he struggles to write, can't really tie a shoe, can't remember basic hygiene, and is afraid to ride a bike. So it goes, with a child like this. Gifts, and burdens.

Hopefully you are in a public school that understands the condition and will deal with it in a positive way. If not, MOVE SCHOOLS. By and large, children with Asperger's love to learn, yet most have very negative school experiences because they have trouble fitting in with the patterns and social settings of most schools. My son, however, has had a FABULOUS elementary school experience, so I KNOW it is POSSIBLE, and urge you not to settle for misery. Among other things, misery leads to behavior issues. Happiness mitigates them. Your life will be MUCH easier with a happy child.

Read all you can to understand your child. Advocate for him at school. Help him navigate friendships. If all goes well, you will find yourself with an amazing child that shows little "bad" behavior.

As for the Asperger's forum I like to read, I'll share the name with you, but caution you about dipping your foot in there. The forum is Aspies for Freedom, and a lot of the adults hold quite a bit of anger towards the NT (nuerotypical) world (including, often, their own parents), plus as is the nature of Aspergers they tend to be very blunt. But I have learned so much from them, it just takes a thick skin. I go there respectful, looking for insight, and that helps me be accepted.

We have considered the special diet some other posters mentioned, but it is very difficult to follow, and only about a third of those who try it find improvement. One father at the Asperger's forum told me that what he has done for himself and his boys (they all have Aspergers) is to take out only the glutten, not the casiene, and that it has worked well for them. Basically, it does seem that those on the spectrum have more digestion issues than those who are not, and the special diet is this giant slam at fixing it. If you think you can follow it, it certainly cannot hurt, and I would much prefer trying that before agreeing to medication of any sort. But, first and foremost, you have to understand that your child has different needs than other children, and as long as you honor those, he should be fine.

Good luck!

ADDED 01-31-08:

I want to add that Sherry, above, made some excellent points. The rigidity she mentioned is very important for a parent to understand. It isn't about being stubborn, it is about a true inability to absorb something different. A different routine, or a different opinion. Issuing consequences in these situations will only frustrate the both of you, and make things worse. Instead, you have to try to bring the concept to their form, to something they can understand and absorb. And it's also to good to have a conversation about flexibility, how you know it is difficult for them, but that life is going to require it. All of this will take time, but please be patient when you run into those situations. Your child CAN overcome it when most necessary, but it will take patient work, and you definitely need to pick your battles.

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H.D.

answers from San Francisco on

I don't know much about Asperger's, but I did see Jenny McCarthy and someone else on Oprah talking about autism and they both altered their son's diet and it helped them a lot. There is a naturopath in Fremont that you might want to look into (she has helped me in more ways than one)! Her name is Anankah and her office is called The Reference Point, the phone number is: ###-###-####. It might be worth giving it a try. I'm new here, so I'm not sure if you can pm me, but if you want any more information about her, I'll be happy to answer your questions.

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S.W.

answers from San Francisco on

Hi. I have two children also. My son is almost 17 and my daughter is 14 1/2. So, they are about the same difference in age as your two kids. My son as PDD/NOS with mostly Aspergers symptoms/behaviors. He was not diagnosed, however, until he was 14 1/2! So, I can relate to how challenging your life must be. So many things have always been hard for our son. I would saw the most difficult thing is his rigidity about what he will and won't do. He has a lot of sensory issues - clothing, noises, food - he will only wear shorts and sandals year round (even when it's freezing); he decided at 2 before we have any idea how he figured this out that he'd never eat meat because it was from animals; he has trouble with loud noises. He also has a lot of trouble with social things - he's very shy and social things are hard for him. In hindsight, early intervention like you are doing is probably the very best thing. I think learning how he learns differently is key. I didn't know that my son didn't learn from watching others - he's extremely smart and so I couldn't fathom him not getting things in the same way most of us do. He needs scripts to help him with social stuff - ex. if you want to get your hair cut, say this "I want to have an inch trimmed off the length and then have my hair neatened up." Each time we go, we go over what to saw again. He likes kids and has friends but doesn't get things like small talk. He hates sports. My son does not respond well to being pushed/forced to do something (it just plain doesn't work for him). It results in him regressing and acting out - when he was little, he would sit down and refuse to move. Part of the trouble would be he would saw he'd want to do things and then get there and hate the activity.. this has to do with, however, him not being able to understand what something will really be like. We now try hard to prep him and have coping tools along (an Ipod helps him with noise). One of the best people I have is a therapist that really gets aspergers kids and understands how they think. Another is the special school he goes to which is for kids on the spectrum. It's been h*** o* my daughter too because it's limited her life (lots of places are too hard to go to and always have been). On the plus, he's a very kind, gentle, bright boy and he's musically gifted (piano). He gets along great with his sister and she adores him also. We live in the SF Bay Area. My son takes medication for anxiety/panic attacks but it also helps some with his rigidity/social anxiety. Try to keep exposing your son to new things but get support because I know we kept trying and trying and with no support and no diagnosis, we just stopped doing certain things because they were too hard (now we are sorry because he's almost grown and we need to develop some of these skills). Kids on the spectrum need to be taught life skills. You will get through it - there are lots of great folks out there that can help you. My son is much better now that he is diagnosed and I understand what he's going through. I think even though it's hard, my daughter is a more compassionate person having had Scott as her older brother. She does model some of his things like being an extremely picky eater too which I wish she didn't but socially, she's perfectly fine and is great with all of his friends on the spectrum - she's very accepting. Best of luck.

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V.C.

answers from Bakersfield on

I have a 10 year old son, he is a Aspy. child. The best thing that we have ever done is to have a Certified Behavioral Analysis come into our home. Two and a half years later we have a much happier home. She worked with me as well as my son. She taught me how to handle every situation with positive and negative reinforcer's.I hope this can help you.

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