Autism?? How Do We Deal with This?

Hey K.,
First of all, you are right to reach out and not deal with this alone. I can just visualize exactly what you are going through. You are right to say these are not "naughty behaviors" and yet, in time, many of them will be in his control through learning, observing, testing, trying and working through some of his challenges.

I have worked with children and adults with special needs, especially more challenging forms of autism, for 8+ years. I live in the same N.Orange County area and through much research and experience have written 2 children's books which introduce typical peers to autism...in hopes that learning more will help them better understand and interact with children living on the autism spectrum.

One thing you mention is a sometimes aversion to touch and yet, when you wrap him, hold him and rock him, it's soothing. It sounds like a sensory challenge that he likes the firm even strong pressure on his body, but a quick touch might be startling.

I don't want to make a bunch of suggestions directly regarding your child, as each child with autism is completely unique, but I will make a few suggestions for you:

Via YahooGroups, CafeMom etc, there are some TERRIFIC online support groups for moms such as you that need to be heard and need to hear other moms going through EXACTLY what you are going through. YOU ARE NOT ALONE and you don't need to recreate the wheel to help yourself and/or your son. I involved in CafeMom - a free website - where you can join a multitude of groups on very specific autism challenges. You will feel more connected.

There are also actual support groups in OC if you do a google search where you can go out and meet with others in your similar situation.

When I first started working with kids with autism, I knew ABSOLUTELY nothing other than watching the movie RAINMAN which is such a limited view of the autism spectrum. So, I had a choice - embrace these kids who are so unique and wonderful once you look beyond the behaviors and look at them with lenses of love OR quit. I chose to learn as much as I could about them on my own time while also working with them. I went to Placentia and Yorba Linda Library and checked out as many books as I could on the subject and read, read, read...then I started buying books and soaking up as much as I could. A few years ago I wanted to share what I learned, especially with typical peers...then long-story-short, I now can share what I learned through my fictional characters.

You might find this helpful too...I recently requested a grant through my church, Placentia Presbyterian, and have now taken my vision to the Placentia Library to create a new program designed to include kids with autism in a typical storytime experience at the library. They are just getting ready to launch to program and this is it. Super STAR Storytime for kids with autism 4-8 will begin meeting the 4th Saturday of each month from 10:30-11:15. Seating is limited and registration begins on Aug. 24. There will be stories, songs, craft and snack. You are the first person in the community (outside of the planning) who has been given this information.

Sorry for blabbering on, but sharing autism awareness and increasing support for families at my own little level is a passion of mine. You ARE NOT ALONE.

You can connect directly with me through my website at www.AisForAutism.net

Take care and have a great week.
J. Keating-Velasco

P.S. In this journey, you will also get plenty of "advice" from people who will comment and suggest things without fully understanding autism (or even partially understanding autism)...just due your best not to internalize this "advice", brush it off and move on to better resources. By the way, you can ask God for patience....and sometimes just patience to get through the next minute of the day...or the next meltdown. Take care!

Hi K.,

There are several programs and classes that can teach you strategies to help with the issues you are having. The is a number you can call for Help Me Grow Orange County at 1-866-476-9025. They can offer you suggestions of programs that you might benefit from.

Some of the classes I attended that helped our family are SEEPAC, Cuidar, and More than Words. Cuidar might help you with your older son as well as the younger one. Cuidar is offered through UCI Child Development Center. Call Shahrzad at ###-###-####. You can bring your child with you as long as they are potty trained. We learned the calming technique in this class and it changed our life.

SEEPAC (stands for Support Education and EMpowerment for Parents of Autistic Children) is offered through For OC Kids. This class is awesome for families with newly diagnosed kids. Call ###-###-####.

More than Words is a program to teach parents skills to help with speech and language. This is also through For OC Kids and their number is ###-###-####.

For OC Kids also offers a Support Group for Parents that meets once a month.

The other thing you might check out is Respite Care through Regional Center. We did not qualify for this but it is worth looking into. They will provide care for your children to give you and your husband a break. Some parents I know used their respite care to attend the classes I mentioned above.

I am sure if you are feeling like I did when our son was diagnosed, it is all overwhelming. Try to start by looking into these programs and get on the lists to sign up. It may seem like an impossibility to actually get to the classes but ask friends and relatives to help you and I guarantee you that it will help you and your family.

Please feel free to email me with any questions at ____@____.com

Hang in there,
C.

K., we need to talk. I live in Anaheim and my 10 yr old is high functioning autistic so I've been there and done that. I also have a 7 yr old ADHD -- severely. Sorry to hear about your 1 yr old -- it is genetically linked: the autism/adhd/ developmental issues. Have you contacted REGIONAL CENTER -- for Orange County. You should qualify for FREE PRESCHOOL for your 3 yr old and likely services for your 1 yr old too. I teach high school -- not in Anaheim, so I am familiar w/ what schools don't tell you because they can't afford it, but you still deserve it. Sadly sometimes it requires an ADVOCATE (costs you $$$$) to get the attention of the district. E-mail me back if you want to get together. Trust me, your life will get better once you get a handle on all this. C. from Anaheim --- different C. F than previous advice -- she does have good advice too.

Hi K.,
I recommend the yahoo group for sensory integration disorder http://groups.yahoo.com/group/sid_dsi . Sensory Integration is a spoke in the wheel of Autism spectrum and PDD-NOS diagnosis. I was at a loss 13 years ago when my daughter was having tantrums, no eye-contact, obsessive about certain toys, and preferred to be left alone.
She is the middle child and I knew something was up with her but since she did not act out in preschool ( and it was church pre-school where I do not think they ever said a negative thing about any of the kids) Everyone said "she's fine". Well she wasn't and neither was I, We were a mess by the time we got to pre-school after fighting getting ready, fighting brushing teeth, fighting brushing hair. With an older and younger daughter too.
We had a great deal of luck when we found a fantastic Pediatric Occupational Therapist who specialized in and/or recognized sensory integration disorder.
Also the book Out of Sync Child was a life boat.

The best advice I can give you is to remember- #1 you are your childs best advocate, its not a hobby it's work and its their quality of life that depends on it. Research, find support, ask questions, and listen to your child with your heart.

#2 Don't believe everything everyone says unless you feel it in your gut- even if they have a PhD. Autism is like the pacific ocean- it's a huge diagnosis - and is different for each and every person who is diagnosed- even in the same family. There is a lot of weird advice and strange treatments- watch out for your child and your family.

#3 Sometimes when you want to pull your hair out- JUST LAUGH! We have some stories that were not funny at the time that prove pretty hilarious to my daughter and her sisters and me NOW! Enjoy every minute you can and forget the rest- tomorrow is always another day!

Take care
D.

Hi there -

My son is high functioning - he is 7 now. We've been through a lot and still going through it...but have learned some along the way...too much to write here...but here's a couple suggestions:
* Autism Speaks has some great info on their website. They also have a "100 day kit" - which give parents info on what to do in the first 100 days after diagnosis. They also have some resources info on there.
* My son is a patient at For OC Kids...a neuro-development center...and they help assess progress and formulate treatment approach. They will also do a full assessment if needed and review your IEP.
* For OC Kids also has a parent education series called SEEPAC...this is very informative and helpful...they will have a session starting later this year - I highly recommend it...they also offer IEP education sessions - to help you prepare for IEP meetings.
* There is another website called TACA - they also have a lot of resource information.
* Each school district is different...some are easier to work with. Bottom line is that you need to identify what your son's struggles are and if you feel the services are not enough, then keep telling them...in writing...contact the Autism Coordinator for the district, and keep "CCing" the Superintendent and any teachers or person who is working with you. Be reasonable, clear on what your concerns are...your son should have had a full assessment...with goals developed based on the results and services designed to help support him meeting his goals. Anytime I have felt concerns about progress or services - I contact the "team" working with my son and we meet and discuss and figure it out.
If you want to discuss further - feel free to email me.
____@____.com

You might look into the efficacy of NAET with ADD/ADHD.

Have you tried the Regional Center?

carrie offers great advice. i have heard about the regional center in san diego and it is great. the family i know gets free preschool and a sitter for a few hours each week. good luck.

as for speech, i was going to suggest contacting CSUF Speech and language department

K.,
I wish I had some advise but I don't, nor do I have patience. I guess that is why God didn't give me any of these special kids. I don't mean special as in problem kids, I mean special as in wonderful. God only gives us what we can handle and he knows that you are the best thing for these three little ones, because he knows that your mind will work and find something to make things easier and better for them. Get your youngest one in speech class if you haven't yet. Take a step back from the situation with your Autism child to find out what and how the tantrums start then try to avoid them at all costs. Instead of getting crazy yourself, stop,step back and think things through, what would have changed this whole mess. Ask God for ideas or to open your mind in how to deal with all three, so that you can be a great mom like you want to be. Not that you aren't, but if your like me you never think your good enough.

And whatever you do don't ask God for patience because he dosn't grant them, he gives you learning experiences to strenthen your patience, (tricky). Ask him for your eyes to be opened in how to best help them each. And WOW all of a sudden you get these great but simple ideas and it all makes sense.

I wish you the best but remember God doesn't give us more then we can handle and he must think you are amazing. Show him that you are. Best wishes! J.