Advice for helping my son.

Danielle - posted on 10/04/2010

I have a child one with PDD and the other with ADHD. Its hard as a mother to place ur child on meds but since Ive placed my child meds my child that was failing school is a A and B student and my other child that was aggressive is calming down. I tried everything herbs and dietary needs and it did not work. My last resort was to place on meds and they both are doing better.

Diane - posted on 09/28/2010

Our 12-year-old middle-schooler has been on the GF/CF diet since age 3. Diet has been extremely beneficial for him, and while at first he was a very picky eater, over time we were able to expand his diet so that by age six or so, he ate a wide variety of foods, though still gluten free and dairy free. He doesn't feel like he is missing out on food, and most things his friends eat have a GF/CF alternative. During the Summer I discovered Udi bread and Daiya dairy-free and soy-free cheese substitute. Both are AMAZING, and our son thanked me profusely for his new non-allergic food. Now he enjoys new foods like patty melts,salad with cheese, his pizza is much more tasty, and the Udi bread is the same consistency to sour dough bread, and toasts similarly.



A huge plus for me is that our son started making his own breakfast and lunch beginning last Summer (after graduating 5th grade), and he loves to cook. He is very methodical and organized (gets that from his dad who is an amazing cook), and makes many simple recipes, uses the microwave for reheating, knows how to use the oven and burner (though not without an adult present). Once school started back up, I make his lunch and he still makes breakfast. I'm proud that he has learned how to do basic cooking and is willing to help.He makes a mean scrambled egg for breakfast, and went so far as to ask me to call him if I plan to make eggs so that he can cook them because "I don't make them right". He has also handled mowing the front and back lawn and all watering for a few years now. I believe staying GF/CF has helped him progress as far as he has and continues to improve.

Heidi - posted on 09/24/2010

We recently went to Pathways, the mental health specialists in our town and my son will be attending the social skills training group there. Pathways here not only offers what they have available but also looks into the community and helps us connect with what is available out there that is needed and he is eligible for...Just finding out all resources that are available in your community not only for your son but for yourself as well is one key.

Debbie - posted on 09/23/2010

My son has AS and ADHD as well. He's only 3, but he used to be such a handful!!! Violent, agressive, self harm, couldn't sit still long enough to eat a meal, couldn't sleep properly, didn't feel pain, etc, etc, etc. The first paediatrician we took him to wanted to medicate immediately with an anti psychotic medication, but I was totally against medicating him at such a young age, particularly as a first line of attack. We ended up seeing a naturopath, and now he's a different little boy. He's generally no longer violent or agressive, though he still has violent outbursts occasionally that are triggered from frustration, and he very rarely self harms anymore. He now goes to sleep within about 30 minutes at night (down from 2 - 3 hours), and can sit at the table long enough to eat his meals now. And even though he still has a very high pain threshold, he can actually feel pain now, which is a really good thing - it's so scary when they don't feel pain!

The biggest change that we made was to his diet. We have removed casein (dairy foods) and gluten. If we make a mistake now and give him gluten, he becomes seriously hyperactive again, defiant, agrumentative, etc. The thing with gluten is that for certain kids (particularly those with ASD), it can act as an opiate. So they crave the foods containing gluten and often don't want to eat much else. It gives them the "high" that drug addicts get, and can have a morphine effect, which is why my son didn't feel pain - the gluten blocked it. Since we've removed it, he no longer complains of tummy pains, and has a much more varied diet that he is willing to eat.

Honestly, it's like we have a different child now. He's still hyperactive compared to other kids his age, and he still has the social issues and idiosyncracies that go with AS, but he's so much easier to deal with now. He's a happy, healthy little boy who is polite and fairly easy to get along with. It's amazing what diet can do.

Also, one of my friends saw the change in my son due to removing the gluten, and thought she'd try it on her son. He is 10 and has severe ADHD. He's been medicated with Ritalin for several years after the school refused to have him there unmedicated after he stabbed one of his friends in the stomach with a lead pencil. He's been on his new gluten free diet for a few months, and has been off his Ritalin for about 3 months now. He's so much better behaved now, and you wouldn't know he had ADHD. He's polite and calm, and not aggressive at all. When I saw him last time, he thanked me for telling his mum about the diet because he feels so much better now!

Anyway, good luck with your search to find a way to help your son without medicating. It's very hard but so worth the effort!

Donna - posted on 09/22/2010

As a mom, former teacher and educational advocate, I suggest you first go to a Developmental Pediatrician and get a diagnosis and educational plan to bring to the school to see what they can implement. Many schools have social skills programs, and if not, the school psychologist can help out. Once you get the diagnosis, call a child study team meeting with the school. You can ask if there are any advocates who can accompany you to the meeting. At the meeting, the psychologist, social worker, special ed teacher and regular ed teacher should work with you to develop a plan in school. There are plenty of books at the library you can look into. Also, join the schools special ed parent group.
Hope that helps,
DScrima Black, mom and author of MommyBest: 13 Inspirational Lessons Derek & Dylan's Mom (and maybe yours) Never Learned in School.

Rosio Alba - posted on 09/22/2010

i work in a classroom for children with aspergers, autism, and other behavioral disorders and we had a student who sounds similar to ur son, one thing that worked great with him was social stories, u can make them up urself or find some that are similar to what his problem is and read it everyday with him. The social story may help him understand thats it is not ok to talk back and be defiant and in the social story you can put in diffrent ideas that he can do to relive his stress. You should also talk to his teacher abou talking to all the kids in his grade about they things he does and why he does them kids can b very understanding once you explain things to them in a way they can understand this would help both ways, they will learn to be more empathetic and understanding of your son and your son may feel less stressed.

Krista - posted on 09/22/2010

My 11 year old, sixth grade son was diagnosed with Asperger's during his second grade year. In addition to Apserger's he also has ADHD. Through the school district we secured an IEP and BIP (Behavior Intervention Plan) that helped use his strengths to build up his weaknesses. Social skills training has been amazing for him and there are many programs out there. I have been trained in the Boys Town Model of care and they have a social skills curriculum that is awesome. We have also used social stories to help him understand where his peers are coming from and how to better interact with them. If you do a internet search, you will find hundereds of social stories that are pre-made and ready to use. The best way to handle a situation is to teach them the skill outside of a crisis time. Your school should also have a way to hook you up with resources in your community that help families that have children with special needs. Hope the helps.

Jennifer - posted on 09/22/2010

My son is 10 and in 5th grade and he has the same issues, medication or not. He has no friends, he has trouble socializing and no one gets him at all. Now he's so desperate to fit in I feel so bad. He's been seeing a psychiatrist for medication to help him focus in school and such, but that doesnt do anything for his socialization issues. When you see a psych, tell him/her about the social problems and fitting in, maybe they can have a TSS for your son in school to help with this. I lucked out that there is a community program that comes into the school and works with them and what they do is pull him out of class for "group time" and when he acts out and over the last year and half, he's improved so much he rarely needs to go for acting out but he'll go and gets help if he needs it. I am still struggling with the social aspect though. His program doesnt work within the class room, they take him out and work with him and then send him back to class. A TSS might help better with directly helping the student learn how to interact and how not to turn the other kids off. if your concern is only the socialization and he does good other wise, I wouldnt medicate right off. PUSH for an IEP evaluation with your school. Might be a wait but if you can get certain things down on paper, it helps.

Donna - posted on 09/21/2010

Homeschool! I never thought I'd become a home school advocate, but for Asperger's and ADHD, your child stands very little chance of success in a public school. I say that as a mother of six (oldest is 34, youngest are 7 yr old twins). I have a 15 year old with the same diagnosis, and the times that we've had the worst problems are when I've tried to send her back to school, it's been a disaster every time. I'd suggest signing up for the K-12 program, and then look for your local home school groups, you'll find lots of other Aspie kids, and the typical kids will be more tolerant of your child. Trust me, you'll save yourself and your child a lot of stress

Karen - posted on 09/21/2010

Hi there,

My youngest son is 8 and last year we experienced larger set backs with him and his behavior as well. We did not want to medicate however even after reducing as many of the exterior static and reducing his environmental stresses including bringing in an in home ABA therapist... We finally started respiradone. Very small doses at first... he has finally leveled out emotionally and we are able to get back on track with academics and are making gains again with him socially. This last summer was a nightmare at ended with him having to be admitted for 3 weeks... but NOW??? He's a happy little camper and is enjoying life again. Not to mention our household stress has reduced greatly in conjunction? They are all different, but at this stage of the game after all other remedies have failed, Im glad we did finally make the decision to medicate. I believe my son is glad that we did as well.

I hope things start getting a little easier for you soon...
~K

Mindy - posted on 09/21/2010

We have a similar life. We had a fire 10 months ago and that really set things off. I have a daughter with microdeletion on 16p chromosome, one of 2 in the WORLD, she is 7. My 5 yr old was supposed to be my healthy child, so this is devastating to me. We have her on Adderall and prozac. Things got better. We have "heart to heart" talks where she is allowed to say whatever is on her mind. I do not punish or try to teach her a lesson, I just listen and end with a hug and a kiss, it really helps her to share, because before she just filled in the blanks with whatever a 5 yr old mind could come up with. After the fire my husband worked out of town a few days and she told someone he died, then I said that's not true and she said why are we living in a funeral home? It was a HAMPTON!! Maybe try the FREE ZONE where he can express himself without fear of punishment, this will also let you into his thinking, head off his idea to hurt himself or run away??? All we can do as parents is offer suggestions, I know when I was in your place I TRIED EVERYTHING!! Best of luck to you. I snuck her a candy the other day and said nothing just smiled like we were being sneaky. She busted into tears and said Thanks mom for thinking of JUST me, I know you love me. It's tough for her to share the attention of her special needs sister so feeling special is VERY important to her. Hope this helps!

Dori - posted on 09/21/2010

RDIconnect.com - find a consultant and get moving. My son started 2 years ago and it's like night and day in social settings. Aspergers kids can move so fast with this program due to the high IQ. It takes a lot of dedication, as it's a family endeavor, at first. Ask your doctor (do you have a DAN doctor?) about Brain Vibrance vs the stimulants for the ADHD. It may take longer to kick in, but doesn't have the side affects. Also consider the GFCFSF diet, which can take him out of the fog! Getting him tested (biological) provides concrete areas of need, such as gut, yeast, etc. Getting them healthy is job 1!

Sharon - posted on 09/21/2010

Hi Juliana! My son is now 13, he was diagnosed ASD and severe ADHD 7yrs ago, i finally decided to medicate his 4 yrs ago, its been a rough ride finding the right medication, but i can say we are mush happy now with it. He also went though the same, when he started mainstream school, he seem to become more withdrawn, defiant and quiet violent. The school and he just could cope, and eventually expelled him at 7yr, i've been fighting for years to get him the education he is entitled to, he was out of school for 9mths, then we found mainstream with a special unit that was useless, home ed was not an option for me, but finally 2yrs ago we found an amazing independant day school, its a bit of a trek for him being an hour and 1/2 away but he is now happy and starting to thrive. I dont no what advice i can give but there are school out there but they seem very hard to find, and its a fight to get them there.

Diane - posted on 09/21/2010

I suggest you start by spending some time on the TACA website www.tacanow.org - lots of information to help families dealing with autism. I pulled this from a TACA article that may give you some ideas as well:

What do I do if the doctor diagnoses my child with autism?
If your child is diagnosed with autism, do not wait. This is where TACA will guide you. Come back to the TACA web site and start here –
• TACA’s newly diagnosed guide at http://www.talkaboutcuringautism.org/sup...
• Connect with your local TACA chapter at http://meetup.tacanow.org/
• Join TACA-USA at http://health.groups.yahoo.com/group/tac...
• Apply for a free 1:1 TACA Mentor parent to guide you at http://www.talkaboutcuringautism.org/abo...
• If under age 3, contact your local Early Intervention office http://www.nectac.org/contact/ptccoord.a...
• If over age 3, contact your local school district’s special education office - either call your local elementary school and ask them for the contact information for the district special education office or Google search for your city and state and “special education”.
• Read our Autism Journey Blueprints so you can SEE you’re your path for the next 3 years will look like - http://www.talkaboutcuringautism.org/gfc...
• Go to a TACA meeting and get your FREE Autism Journey Guide. (If there is not a meeting close by, buy one for $15 from the TACA website store) http://www.talkaboutcuringautism.org/new... .
• Check the TACA website to inquire when the next Autism Journey Seminar will occur. This is also available on DVD for $15. http://www.talkaboutcuringautism.org/new...
• Don’t give up hope. Read these stories of hope and recovery. http://www.talkaboutcuringautism.org/fam...
TACA has witnessed many children greatly improve with early intervention services and biomedical treatments unique to each child’s needs. With the proper assessment, early intervention and treatments there is great hope for children affected by autism. The earlier children receive the diagnosis, start early intervention services and receive medical treatments the better the outcome.

Shallyn - posted on 09/21/2010

Just last night I heard about a child that has Aspergers. Then how he was helped naturally. Would you like me to forward you his story??

Tara - posted on 09/21/2010

My Alex is 9 with AS. He struggled so much in school last year that we considered home school as well. The truly frustrating thing is, like you, we have very little trouble with him at home, mostly becasue of the journaling we do together...but also becasue we understand him. However, after testing (his IQ is 146!) , securing an IEP ,enrolling him in play therapy once a week (phenominal!) and moving him to a new school in our district which offers him both gifted and autism support classrooms, we have found that he is improving tremendously. I am with you...no meds. Asperger's is one of the few ASD that if tested beyond 21, would not typically be diagnosed. Not that people grow out of it, but rather they grow INTO it and learn how to find the gifts in it...which is the direction we have chosen for our son. Best of luck to you and KEEP PLAYING!

Carissa - posted on 09/21/2010

My son is almost 7 and in the first grade and is also in public school. It sounds like your son is a lot like my son. We have done ABA therapy and other therapies since he was 10 months and that has helped so much with Cooper. He now doesn't have therapy, but we have an IEP for him that follows him in the public school system. He is doing very well but he does have an aid that is there to help him with transitions and sensory breaks. Please let me know if you have questions, I know every child is different, but I would try everything else before trying medications. I feel like there brains are so different then ours anyways and teaching them how to function in the world is providing tools for our children to be successful on their own. I am praying for you and your family. Hope that helps.

Melissa - posted on 09/19/2010

It sounds like he is under way too much stress. You can medicate him, but if he went all summer without it, I would try to find another way. My daughter sounds a lot like your son and she is doing well at home. I considered putting her into a classroom this year but after meeting with a teacher and going over what classroom life would be like for her, I decided that would be a huge mistake. The thing with socialization is that when kids are homeschooled, they get to socialize with a variety of people on their terms instead of being caged up with dozens of kids of similar age. [You don't have to be thrown into a lake of piranhas to learn how to swim.] If you don't want to pull him out or medicate, see if you can have some adjustments made, such as less classroom time, less homework, or whatever the triggers seem to be. Maybe he'd do better with a half day program?

Rachel - posted on 09/15/2010

does he have an IEP? He should and he should be getting speech for pragmatic skills and counseling for individual therapy and also in group for social skills; Pragmatics and social skills are two of the most important school and life lessons a child can have and most kids get along w/o specific classes in these subjects but not all do -- When we were in public school I had speech added 2x week and counseling 2x week - specifically for this and my son is also very very bright.. We've moved him to a special needs school and part of the regular curriculum has pragmatic language and social skills on it for the whole school and his IEP is the same so I'm actually considering scaling back on some of the extra services.

Latisha - posted on 09/15/2010

I dont think home school would be best. My baby brother ,now 17.. :) has aspergers.. He went to regular elem and middle school. being on the same page with teachers and having them communicate it in calss , without them pointing anyone out, was huge in him making friends and being accepted... He is now in a high school that specializes with aspergers and other social dificulties in kids... do your research before making any decisions... Therapy has been a huge plus with my brother.. He needed to learn proper behaviors and how to be comfortable in social settings. He still has his ticks but they are better controled and you can see he is more relaxed.... Your state should have programs to help you and your family.. NO MEDICATION!!! I hate that docs use that for everything... Try different routes before drugging him!! ( some kids may need it, not passing any type of judgement).. Best of luck.. :)

Zenzele - posted on 09/14/2010

Maybe we can talk him into home school if there were activities or sports you would agree to have him participate in within the community. Something he really cares about where he can maintain a group of friends.

Juliana - posted on 09/14/2010

We are doing behavioral therapy. My husband and I were talking about home school. I mentioned it to my son and he's very against it because he thinks he wont have any friends. Which is the problem now, he calls some kids his friend but honestly if you asked them, Im not sure they would agree.

Zenzele - posted on 09/14/2010

The biggest difference that I hear is that school is constant socializing and that appears to be his largest deficit. The more his peers require him to be social the more he will have behaviors. Instead of medication, which he has proved he does not need, maybe behavioral therapy. Is it possible for home school or private school?