Autism Spectrum--My Son Is "Different"

http://www.ellennotbohm.com/

I love the way she writes. It might help you too, to read her books. She's not a doctor, or an expert, just a mom, like you.

:)

My son is 16. On the spectrum (PDD-NOS), has ADHD, Tourettes, Math Dyscalculia and has sensory issues as well.

Your post could have been written by me when he was 6. Like word for word. It was really, really hard. I'd say that from the time he was 4 to the time he was 11, we just survived. It was difficult just getting through the day, so I do know what you're going through, I really do. On top of that, I had his two little sisters to deal with, too, both high energy, and a husband who traveled a lot. So, yeah, life kinda sucked back then and there was really nothing I could do than to just get through it.

Of course, we had all the supports in place. We had his IEP, we did speech and occupational therapies, we saw a fantastic psychiatrist for medication management, we had a naturopath who helped with supplements and vitamins, we organized playdates and signed him up for t-ball and soccer and karate so he could use up his energy, we did all that stuff and it all helped. But daily life at home was still hard.

I WILL tell you that it got better. With each passing year, as he matured, it got easier to deal with him. In fact, right now, as I'm typing this on the couch, he's sitting in an easy chair across from me reading a novel...for pleasure. When he's done reading, he'll probably want to discuss it with me. He still has all his diagnoses, but he's mellowed out DRAMATICALLY since he was 6. He's actually become a REALLY cool teenager. Still only has 3 friends and refuses to socialize like his sisters, but that's who he is and we accept that.

All I can tell you is that you're not alone. Hang in there. Don't get discouraged, don't start second guessing yourself. You don't have to explain his behavior to every stranger that looks at you weird. If you can, try to get some down time for yourself. Get out of the house for a couple of hours without the kids if possible. You're right, this IS a challenging time for you. You just got the diagnosis, you're still trying to find the best way to help him. It's still all so new and you're in a transitional stage. Just survive, just get through it until it gets better. Allow yourself to be exhausted, to say to yourself "this is my current reality and it sucks". You can handle this. You really can. Feel free to PM me if you need to vent. Most likely, I've been there myself and can relate.

Take him to a GOOD occupational therapist that has the extra training in sensory integration dysfunction---which is now called sensory processing.

I took my child to private OT sessions. The sessions helped!

Check out the book, "The Out of Sync Child"

Hi Lovin, my son is 7 on the spectrum - PDD-NOS, and is mainstreamed at our local public school.

Everyone on the spectrum is different, but there are also some commonalities that might help you as you learn and understand them. There's a great blog - adiaryofamom.wordpress.com - mom of 1 autistic and 1 typical child. LOTS of information, supportive community, wonderful writing. I highly recommend visiting it, and she has a "community support" page where you can ask questions.

Also, you can visit http://www.autismspectrumexplained.com/ - it's written by sisters - one autistic, and one "mostly typical" :) she's a friend and they helped me co-design a website I just created to help people with this - it's www.autistikids.com, and it's a collection of blog posts in many catagories - the posts were written by AUTISTIC adults (and a few young people), so it's information about autism from the inside out. Your son probably can't really articulate how he thinks (any kid his age can't really), so the site might help.

I don't know what you mean specifically by disruptive, but re. social cues, the things we "get" easily (social nuances) are things that need to be explained usually to kids on the spectrum. If you haven't heard about social stories, they might be helpful in explaining things to him - they're like comic strips for whatever you're trying to illustrate/explain. We used them to explain school rules, behavior rules, etc. Visual processing is often easier for kids on the spectrum.

He may have sensory issues, which make things very difficult for him - is he sensitive to things, or is he always SEEKING input? My son is a seeker, so there are different ways to approach sensory issues. I believe the book Out of Sync Child might help you there.

Does he have communication challenges? If yes, that's the number one thing to deal with. Whatever method you can find to help him communicate, pursue it. Do NOT let anyone tell you that speaking is the ONLY/BEST way. Very often speaking is HARD for people on the spectrum, even when they CAN speak. It can take a lot of energy. When my son is very upset, he looses his words and can't speak till he calms down.

How long it takes to accept a diagnosis varies from person to person. It's a process, but you will get there, and it will give you power to deal. Be gentle with yourself. And honestly, you're doing your best, so don't waste any energy on what other people think (easier said than done, but you don't need that kind of BS from others).

Feel free to PM me, or you can email me at ____@____.com care.

I'm a mom to an almost 8 year old boy with classic autism. It did not take me long to accept his diagnosis because I knew before the doctors knew. My son was nonverbal until age 7. Some of the time I tell people he's autistic but most of the time I just talk to my son about whatever it is he is doing.

For example, if he is screaming hysterically due to whatever reason I'll tell him "hey I know it's hard that we have to leave and to the rest of the world it looks like you're throwing a temper tantrum but what they don't know is you. You did really great whilst at the (store, library, what-have-you) and I'm very proud of you for (using your inside voice, sitting still, holding my hand, walking with me, etc.)

I find that more often than not whenever I do the above it either makes people lose interest or it gets people asking questions. I'm very outspoken and upfront about my son's diagnosis but I don't shove it down people's throats nor use it as reason for his negative behavior.

If at any point you'd like to talk about your son(or other kids, anything really)feel free to message me. I've only been on this autism road for 7 years but I'm always willing to help.

(((((HUGS)))). Yes I can relate! and could write a really long reply to just the one question. My son is 9 and was diagnosed shortly before he turned 3.

1. Your question about behavior - there are a few ways to go about this. TACA has a great business card you can just hand people or you can make your own. http://www.tacanow.org/store/Autism-Cards/

There is also the attitude of screw everyone's judgement you owe them no explanation. Now this isn't exactaly the road I've chosen but it works for some. I have taken the opportunity to enlighten a few people.

These books are good age appropriate books that may help you explain to your other kids and / or kids at your school.

http://www.amazon.com/gp/product/0956175120/ref=oh_aui_de...

http://www.amazon.com/gp/product/193527418X/ref=oh_aui_de...

I'd be happy to chat with you privately. I've been on this journey for over 6 years but it feels like a lifetime.

Beyond the internet, including this site, are there support groups/playgroups in your area? Lafayette is pretty well known for having a strong mentally disabled/challenged, special ed community, I would imagine there must be SOME kind of local group for autistic families.
I just think it would be really nice for you to have some local, physical connections and support, with people your whole family could maybe spend some time with and learn from.
Have you asked any of the local doctors, therapists and teachers you have worked with about this kind of thing? If it's there I'm sure they can point you in the right direction!
I feel for you, I can't imagine how hard it must be to have such a challenging child.

One thing to remember....... your feelings are very natural, and very real. You also may be going through a bit of a grief process, which is totally normal.

Everyone goes through those stages a bit differently..... we are having struggles with my grandson, also. He is almost 7, and we, too, know that he is "different", but he hasn't gotten a diagnosis yet. My daughter already considers him to be on the Autism spectrum, but even there, he doesn't quite "fit". She would almost PREFER to have the diagnosis, so he can get some of the services and treatments that he really needs. (She hasn't been able to afford taking him to any therapy, or specialists, etc., at this point, unfortunately.) She is hoping to take him to a developmental pediatrician in the near future and see what they say, other than "Global Developmental Delay".

I really like Quietobserver's response on how she talks to her son when he is in a meltdown... it doesn't "make excuses" for his behavior, but helps explain his behavior to the people around that might not understand what is going on.

I'm sorry I don't have any suggestions on where to reach out... but some school districts do have parent groups where the parents of similar children can discuss problems and strategies.

Are you on Facebook? I've recently joined a support group called East Bay Autism Parents, and there are a lot of us with kids roughly around the same age as yours, going through the same types of challenges. If you're on FB, search for it and ask to join. It's a private group, but I'm sure there must be some "Request to Join" button on FB.

My son was diagnosed when he was 3 1/2. He's now 6 1/2. It has gotten much easier, but he is still very, very intense. Amusingly, my younger son has special needs (Down syndrome), and he is waaaaaaay easier to parent than my son with HF autism, even with all of the extra obligations that go along with raising a child with DS (therapies, medical appts, etc.). :-)

So I get it. I flop down completely exhausted at the end of every day. But it DOES get easier. Every kid with autism is different, of course, but for us, some dietary changes have helped--cutting out gluten and artificial colors and flavors seems to have a positive impact on his ability to focus and self-regular his behavior. (He's also dairy-free, due to an allergy.) And we did a lot of sensory-integration work when he was younger, which helped a lot. (Nan Arkwright in Walnut Creek is FABULOUS if you're looking for a good OT who is well-versed in working with kids with sensory issues and those on the autism spectrum.)

Good luck, Mama! You got this. :-)

Do you have any patient girlfriends or relatives? He and you can benefit from scheduled time away from each other.

You can also seek a one-on-one sport/hobby. I have given one-on-one dance classes for troubled or shy children.

These type children are ostracized in group sports.

Hi, I would love to chat with you privately to ease your concerns.
I don't know how to get my email to you without making it public.

D.

My son is also different (he is now 16). He was diagnosed just before he turned 3 with Autism and Aspergers, he is very high functioning but he is different. It used to really hurt my heart to take him to play groups and the park, etc. and see how he struggled and how he truly seemed different. Thankfully his uniqueness is not nearly as noticeable now, heck the kids his age are TRYING to be different!!

My son wore me out too because his communication was so poor. Thankfully as soon as we got his diagnosis he was pulled in by the local school district and started a special education pre-school program. That program was wonderful, they helped getting him communicating (not necessarily talking but signing or pointing to pictures) and that helped so much. He had to be taught things about interacting with other children that seem to just come naturally to others. We still talk about how a social situation might be handled better in the future.

Keep on pushing for those services, they do wonders!!!!

Good Luck,

M.

Sounds like my daughter. We don't have an official diagnosis yet besides ADHD but her psychiatrist said she is on the spectrum and has social delay. Breaks my heart to see her struggle with day to day life. And I know, it is soooo difficult! I would love to find people that relate aswell!

It sounds like he needs to be on some sort of med. It also sounds like you have to give him 100% of your attention. It might be that you just need to hire a person to watch him for you so that someone else can entertain him.

I can't say that you spend too much time managing him but that's what I get from this post. You're tired, why? Do you chase him around all morning and clean up after him? Then sit down and put him in your lap. Hold him in a mandt hold and watch TV or something. Don't let him run amok.

You do sound tired. I have a grandson who destroys much and is a challenge. I sit his hiney down in my lap or beside me and he gets to sit there until I am rested enough or in control enough to let him up. But I don't let him run amok and destroy either. I put him right back in my lap or by me.