Autism - Mount Pleasant,TX

Go to Yahoo groups, there are tons of groups on this. I am on a lot of them.

You can also Google Autism and there are a lot of sites.

T.
www.wellnesssiseasy.com

Hey E.,

I am impressed by your strength and I also believe every child is chosen for reason to be sent to us.

As for dealing with Autism vs "fix"ing Austism....
well you can not at this time completely fix it anyway. There is still so much research being done. But it is important for your sanity to find a support group on this topic as well as learn some ways to adjust your parenting style and teaching style for your son's needs.

Most children with a PDD can not communicate well and become overstimulated fast and or are easily frustrated. It helps to keep the settings calm with minimal distractions and minimal people.

Autism is a Pervasive Developmental Disorder and it is considered to have a spectrum of severity....like on a continum of mild to severe, with many points along the way.

Essentialy your complications may be similar are far different from those of other parents to children with Austism. And while I think we are all made a special way, I also encourage you to seek the best treatment to help aid your son in better communication, personal boundaries and life skills at minimum. So that he at least grows into a safe adult. I say this because most people spend alot of time teaching a child to hug everyone. And this is not safe to do with children who will have boundary issues later in life. It is okay to hug but it needs to be reserved for immediate family. It can cause huge problems as a teen and adult when the person fails to excerise a boundary and continually hugs others known and not known. You do not want your child to be taken advantage of ever nor do you want them to be violently retalitated against by someone who did not understand their diagnosis.

Realistically he will need special guidance to get to this point but you certainly do not want a teen or grown adult that has had little intervention as you can not physically control them and well I found it sad to see parents with no other choice than to group home their grown sons. I do know that depending on severity and also the success of treatment, that some adults with autism hold self supporting jobs. As it is for every parent, we just want to teach our little one's to be good people and for them to have a long and happy life. There are some programs to help you both and they vary by area/region. I would contact a social worker or counselor to see what resources they know of in your area. There should be an office for disability services, which your son would qualify and I am not sure how your state works but most often a financial supplement is sent monthly to help support his special needs. Anyway the Office of Developmental Disorders (ODD) or Office of Disabiltiy Services (OFS) should be able to link you to more resources including other moms in your area. What I did find was a link to Austin Area resources and I am sure after some calls you could get more info for you area.

the link is http://www.dads.state.tx.us/autism/AustinAreaResourceGuid...
and the website is http://www.dads.state.tx.us/index.cfm

feel free to message me if you need the link copied and pasted into an email as it is a pdf file.
AND do call you local chapter for NAMI (National Association for Mental Illness?)

I wish you the best and hope some of this helps. You sound like a wonderful mom and I do believe you were hand picked by God to raise your wonderful son.
-mb

Hi E.,

I don't have any parental experience to offer, but I did work as an aide in a learning environment for moderate to severely learning disabled children. We had several autistic children and they were all very different. The most challenging child that I can remember didn't speak, had no concept of socialization skills, was totally unresponsive to anyone, and his behavior was totally out of control. Please remember that I am nowhere near a professional in this area, these are just my observations from being with this child 8 hours a day for a couple of years. When I first come into contact with this child, he was 8 years old. His mother said that about the only milestone that he showed as a toddler was potty training, but that one day he seemed to just throw that out the window also. He would eat the same thing for all of his meals everyday and if that routine was broken, he just wouldn't eat. For whatever reason, we hit it off the first week that I met him. We took A LOT of baby steps to alter his routines. I think one of the things that we found that worked best for him was an activity board. There were pictures of most of his daily activities velcroed to a board on the wall. We started with only a couple of activities put up-one card for lunch and one card for the restroom. We introduced these cards by putting whichever card was associated with the activity we were about to do in his hand. i.e. a few minutes before lunch we would put a picture of his meal in his hand and while he was eating, the card was attached to a velcro strip on the table next to his meal. He actually learned to associate these cards to the activities quickly. Then we could add more cards to his board. In the 2 year period that I worked with him, he was able to add about 15 cards to his activity board and eventually was able to put them in the sequence of his schedule everyday. He even began to alter his schedule somewhat, depending on what HE wanted to do at the time. And he also became "potty trained" again using this method. After he associated a picture of the toilet with going to the bathroom, he would voluntarily pick up this card and grab your hand to take off to the bathroom. Just as with any child potty training, there were a few false alarms, but we were headed in the right direction. As far as educational techniques, there seemed to be so many! Some were so simple that you wouldn't even think of them as educational. For instance, a simple see and say(the toy that spins the pointer to a picture and says a word or makes a sound). We introduced 2 of the same games after we discovered his interest in it. One was functional(as far as sounds and words) and the other was not. In the beginning, it wasn't very pretty. When he tried the one that was not functional, he would become very upset and throw it on the floor. We just placed it back on the table beside him as he played with the other one. He started using the non-functional toy and would mimic what he had learned from the functional toy. This got him rolling in the speech dept and I would think in the comprehension dept to a certain degree. We moved from that to a sound board-a board with letters that would say the letters and make the sound of the letter when you pushed the key. It took a long time, but he learned to make words with this. He was at a point to where he had started communicating by single words at this time, but when he hit one of his days that he didn't want to talk, he would spell his words out on the keyboard. There were so many different techniques that were used for different children. You just have to have lots of patience until you can find what works for your child. The autistic children that I worked with were very tactile-they learned a lot from touching things. And I learned that a lot of the behavior problems stemmed from the children being frustrated over not being able to communicate with others-whether it was because they didn't talk or because they couldn't communicate their feelings effectively.

Like I said, I don't have any parental experience, but this child's mother was there everyday to drop him off and pick him up from school. You could see the tiredness in her eyes because he had to have constant supervision to keep him from hurting himself, but you could also see the love for her son and she would do anything under the sun for him to help him.

I applaud you for wanting to find more information. There are sooooo many parents that just tend to ignore autism and hope it's just a phase that they're going through. I met one woman who has an autistic child, but he is very high functioning. She suffered depression for a long time because she didn't realize this-she thought he was just a "bad" kid. Most of their issues tended to be behavioral. He is a very intelligent child. She has been to counselling to help her deal with the guilt that she's felt about not realizing his condition and is now in a support group and both are doing very well.

I wish you all the luck. I don't have many answers, but feel free to message me at any time if you just need to talk. I think if you joined a support group, that would be great. You could meet other parents and be able to discuss your feelings, frustrations, fears, or anxieties with people that know exactly what you're going through.

R.

Hi E.! Looks like you've gotten some good advice here, so I want to encourage you! My son is also autistic, finally diagnosed at age 8. He is 12 years old now, but I DO remember all those frustrations! You are so much further ahead, not wanting to "fix" him, you have no idea! I know God gave me an absolutely wonderful family, including an autistic child for a great purpose and I wish more people felt the same way. That being said, there are many things to help him as well as help you. Message me and I'll give you my email and phone # and I'll do everything I can to help.

Now, you need some quick help with meltdowns? All of this is from my own experience, and it may not work for you but again it might. Anytime we needed to go somewhere, I talked about what we were doing, why we were doing it, and how to act while we were doing it. I swear, I never felt more like a college professor giving lectures at any other time in my life!!! LOL. I kept my voice calm and even monotone, but he seemed to do better with me that way. My oldest neice made a blanket for him, and if we went shopping I would just put him in the cart and he would cover his head with that little blanket. Sure we got lots of looks but hey - it helped! When my son would have a meltdown, if it was at all possible, I would stop everything, sit down and hold him facing forward on my lap, put my legs over his (to stop the kicking), my arms over his holding him close and preventing punches, and put his head between my head and shoulder. Then I would just let him scream, cry, whatever as long as he wasn't causing pain. I would talk to him (screaming or not) in a calm voice and tell him what we do/don't do and explain his feelings to him. I seriously did this for sometimes 2 hours+ at a time, often 5+ times a day for what seemed like forever. Frustrated? OH YEAH. But, when we finally got to a Dr who could evaluate & make a diagnosis... well, it was worth it. We got to see the top Dr in the state at the time, and after several weeks of testing, she sat me down and told me that when she started with him, all she could think was that I was crazy and it took her evaluations to convince her he was autistic - and then she asked what I had been doing because he was the best severe autistic child she had ever seen in her many years of practice. It's a long hard road, but so very very worthwhile.

there is a website called caringbridge, it is a site for parents with ill children and children aith disabilities. You can probably find moms in exactly your situation that can help you and answer your questions...it is WONDERFUL!! It is set up similar to this....good luck!!

Hi E.,
I have worked with children with a diagosis of Autism for the past 30 years. Since he is in school and therapies, have you asked the people who work with him how they deal with these issues. Home is a completely different place, but it might be a place to start. There are support groups in the Little Rock area. Other parents are of course your best help, but remember, your child is different than any other and you know your child the best. Social stories have worked well for me. Your speech therapist should be able to help with that.The phone number for the Central AR Autism Society is ###-###-#### or 800-831-4821. I know that it is really tough, but hang in there and life will get better.
D. B.

E.,

Check out Jenny McCarthy books. Her son Evan is autistic and she has fought the battle that you are starting. The website http://www.generationrescue.org/ has lots of information on autism and can put you in touch with other families and lots of information that the doctors don't want parents to hear or try in some cases. My daughter is a teacher and we have done research on autism for a child in her class. Jenny's was the most positive and gave the parent's hope.

My youngest daughter had developmental problems and we had to stay on top of all the teachers, doctors and everyone else to make sure that she was getting all of the help that was available so be tough when dealing with those who don't take you seriously or don't seem to want to help. You know your child best and will fight for them like no one else ever will. Good luck and God Bless.

J.

I do not deal with autism, so I have nothing to offer there, except perhaps an educational aide I found online while I was searching for activities for my own son. It's http://www.positivelyautism.com/downloads_foldergames.html and it has some free game patterns you can download and make, to help your child learn various concepts. Also, www.ebeanstalk.com sells toys for children with developmental delays, as well as educational and fun toys for all kids. I've found some nice toys there, and at www.fatbraintoys.com , such as Melissa & Doug letter magnets whose backs are completely magnetized, instead of having small magnets that fall out. Other parents have said these letter magnets have been very helpful with their autistic children.

I'm sorry I have nothing else to offer. Good luck in everything!

E., I think someone said you are in Texas. You need to connect to the Texas Parent to Parent organization and to the Texas Family to Family Health Information Center (a lot more info there than just "health").

You can find the TX P2P at http://www.txp2p.org/. They are WONDERFUL. I know Laura there and she's amazing. Here's what their web site says:

Texas Parent to Parent is a nonprofit organization created by parents for families of children with disabilities, chronic illness and other special needs throughout the state of Texas. The majority of our staff, Board of Directors, and volunteers are parents of children with disabilities or chronic illness and have many years experience providing parent to parent support.

We offer families a place to access information and resources, a one-on-one match with a trained Supporting Parent Volunteer, someone to call or email when you just need to hear a bit of encouragement or help figuring out the next step in your journey with your child. We hope you find our services and resource directory helpful.

We're here to support you and your family! We also provide services to parents and parent group facilitators to help create local support for families, as well as trainings for the professionals who work with our kids.

ME AGAIN: E., you're going to find all the parents you can think of there. They will definitely help you connect. They have the grant for the Family to Family Health Info Center as well. They can teach you anything you want or need to know and more.

You've got the right attitude, you just need a few connections and you're going to take off.

Best of luck to you and your family.

K. Scallan

Hi E.! My son was diagnosed with an autism spectrum disorder when he was 5. He is now 10. I am currently serving as the vice president of the Northwest Louisiana Autism Chapter. I also consider my child a blessing and that this is ours for a reason. We are currently doing occupational therapy, neurofeedback and he takes medications. The road is long and hard, but with perseverence, you and your son can walk it. If you would like to email me off-list I can fill your ear with all the tricks and tips we use with my son. A few that seem to help are music, weighted vest and distractions. Use social stories to help teach him how to interact with the world around him (a good video social story you can get from Model Me Kids website).

There are other treatments, such as biomedical (DAN!). We are currently looking into this but we have no local DAN doctors. Please feel free to email me. Our autism chapter also sends out a "First Steps" document and I would be happy to send that to you. You're not alone and there are plenty others of us who are facing this challenge.

welcome to this wonderful world of autism. We have been living it for 12 years now. Your greatest person to trun to is the ot thrapthist for things to do. For us Sean had alot of touch and feel issues so brushing arms and leggs helped and the weighted vest for his rocking. For behavioral issues because of so many we fucosed on one a week of not doing it with a reward of what he liked to do. when he was 4 it was going to Mcdonalds and as he got older it got to be more like going to a movie, buying a movie, a candy bar. His teacher helped in that they gave me daily notes. We made a smilely to a sad face chart so all the teacher had to do was to circle or high-light the kind of day he had. That teacher still to this day uses that chart for all her children in her class. It help her out to let me know what kind of day he had and I knew if there was something going on. Now today all we do is talk to him and he understand where we are coming from. Decide what is important to you and him, We didn't change Sean we just showed him how to be more like everyone else by being himself. Sean still doesn't get how feelings works he is more like a computer and relates more like a computer. In fact that is his thing. Sean loves music and listens to it all the time he also has a vision problem that is a new can fo worms.

My name is T. K. Mother of an autism and legally blind 15 year-old son. also an 18-year old girl. Married to a great man for 20-years.

I do not have an autistic child, but as a child development professional I deal with autistic children. There are a lot of resources federal, state, and local that you can use for information, support, and get him into some therapy programs. I am not sure how old your child is, but if he is under 3 there is a huge advantage that he can overcome some of the ASD symptoms and integrate into society fairly normally as long as he gets intervention. Have you read the NCHID study about autism? It is very informative and if I am not mistaken it has a list of resources. If you want a copy, private message me with your email and I'll send an attachment to you. I may be able to get some more good information packets from work, I'll talk to some people and see what I can find. I am in Mississippi so the state programs will be different where you are, but the NCHID is federal, so the information in it should apply to you.

I don't live in TX, but our public school has very good programs for special needs. You may have moms right in your sons class that could offer great support. Many moms who are active in our PTA have children with special needs and they seem to have bonded together through their children and local support groups. Good luck!

E.,

I am a mom of a child with Autism. She is diagnosed with PDD-NOS. We were diagnosed back in May of this year. I understand your frustration with meltdowns and other behavioral issues. I lead a single mom's support group the 2nd Tuesday of every month as a part of the EFCA (Edmond Family Center for Autism). You are more than welcome to join us or any other support groups. There are several local support groups in town. Check out www.okautism.org for more information.

M.

If you can google Jim Carries girl friend web site she have cured her son of Autism I think through diet but I am sure their is a web site that is linked to her I think her name is Jenny McCarthy good luck

My grandson, who lives with me was diagnosed at 3 1/2 with PDD-NOS. I immediately started researching on the internet. The first book I read was Enzymes and Autism & other nuerological disorders. I always felt like there was a food connection and that my grandson's body just couldn't process some foods. Anyway, I ordered the enzymes and within 2 days there was a huge difference. He had gone to speech for about 8 or 9 months. Within about a week, he no longer needed speech. He started initiating appropriate conversation. He started sleeping. We were constantly in his face doing floor play. He had alot of sensitivity to light & noise. So we tried to keep things calm. The tantrums were much less. We were able to teach him about his feelings, whether he was hot, cold, thirsty, or hungry. This told me that there WAS definitly a food connection. We ended up taking him to a DAN doctor.(Defeat Autism Now) We started him on a gluten and casein free diet. Also found out he was allergic to corn, garlic, mustard, and a long list of other things. He also had almost no good bacteria in his body. This was probably caused by all the antibiotics he was given as an infant. We keep a daily chart of the foods he eats and his behavior. He pretty much only eats organic meats, fruits and vegetables now. We still do the enzymes which help his body process food and also gets rid of yeast. We also give supplements and probiotics. He had about a 3 week withdrawal period where the tantrums were constant. I can't blame him, take away all my junk food and I'd react the same way. He is 5 years old now, in regular school and all symptoms of autism are gone. I know they are all different. My advice is research what your child needs. Address each issue. Try to keep the same routine at home. We know they love routine. We used flashcards for speech, puppets for feelings.(try to keep him focused) As far as meltdowns, there is a good book, The Difficult Child. Pick your battles and try not to let it get to the point of a meltdown. One thing that helped us - when he started to get upset, we told him what we thought he wanted - I know you are thirsty and i'm getting a drink for you right now - I know you're hot so lets take that hot shirt off. He responded to everything with anger and meltdowns, he knew that something bothered him but he couldn't put it into words, so we tried to teach him what he was feeling and that there was a solution.(other than screaming) Oh, yeah, another thing was that he seemed to get hot and would have more meltdowns. We tried to keep him cool. There is also alot of information on TACANOW.COM and AUTISM.COM. I hope this helps.

There are plenty of other mothers out there that deal with autism. My grandson was diagnosed in March of this year and although it was a shock to our family we always knew something about him was different.

They are in family therapy which helps her to deal with the meltdowns. If he is having problems at school you can get a 504 plan for him which will also help him. You do not have to have a diagnosis to get one either even though the school may tell you differently. An example of how this helps is that my grandson cannot tolerate all the noise in the cafeteria sometimes. On the days or meals (whatever the case may be) that he can't tolerate it the school allows him to take his breakfast back to his room and the school has to provide someone to stay with him while he eats.

Please read Jenny MC Carthy's book on Autism. Wonderful resource, which will serve as a segue to many other resources.
Praying for wonderful things!
--H.