5 Yr Old Has ASD

Updated on March 18, 2008
J.K. asks from Petaluma, CA
27 answers

Hello, my 5 year old son has High Functioning Autisim and will be starting Kindergraten in the fall, hopefully with a full-inclusion aide. He has some severe behavior issues and we have tried every kind of therapy. Im really concerned for his future. Does anyone have older children with ASD, that can give me some insight on how they have grown/matured with the disabilty?

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L.S.

answers from San Francisco on

Hi J.,

My sister has a 19 year old son with high functioning autism. They struggled through public school through about the 8th grade with problem after problem. My sister did alot of research and found that the state would pay for him to go to a school that specializes in autism. It was a battle but there are laws and loopholes that made it happen. The difference in him was and continues to be incredible. He has become so articulate about his feelings, desires, etc. He told me last week how hard it is for him because he just wants to be like everybody else, be independent, and he knows he never will. He also told me how much better he feels since he is not taking medication. A few years ago, a conversation like this would not have been possible. I believe he will go to the school until he is 20. I can get more information from her if you like, just let me know. Best of luck.

L.

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C.A.

answers from San Francisco on

There is an Aspergers High School in Moraga and their website also has good info. Tuition is very expensive ($25,000 a year), and 50% of the kids have their tuition paid under their special ed programs. Imagine the state of CA paying for your child's $25,000 a year private school education. Plan early- the waiting list is very long.

http://www.orionacademy.org/
There is also a program in San Ramon that my daughter attended, excellent class that teaches social skills in a Friendship Club. We paid out of pocket, several schools pay for the service. They also have many summer school programs for these wonderful kids!

http://www.sandiefrawley.com/
http://www.questcamps.com/

You may also want to read "The Bipolar Child" book, our doctor recommended it and it has great info on documenting the behavior and how to handle the rages. Our doctor also recommended supplements called "Kid Calm," "Calm Child," or "TeenLink."

We left private medical insurance (the meds were over $4,000 a month and we had a big co-pay) and joined Kaiser. Now meds cost us $15 a month, the counseling is excellent and their autism program has a 6 month waiting list. Recommend Dr. Rao and Dr. Manning in Pleasanton.

Finally, get some help for yourself. I joined a womens 12-step program for codependents. At first I didn't understand why I was there, and later I understood that raising a raging child is sometimes like living with an alcoholic. The classes and support really helped.

Blessings on your FAITH WALK!

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I.C.

answers from Salinas on

My 10.5 year old has severe autism. It has been my experience that he has not really 'outgrown' any of his behaviors without significant intervention. We have used ABA, Floortime and medication. Each has played a vital role in his development.

Without his medication, he would not be ready to learn how to behave and how to relate. Without Floortime, he would not have the desire to interact with people. Without ABA, he would not have the discrete trial practice to learn how to behave and to interact with people.

Combined with this is a lot of prayer, OT, S/LT and PT. He improves over time but I'm beginning to (sadly) think that he will never appear normal and will always demand some kind of intensive support.

But every child is different and every child responds differently to every type of therapy. It's been my experience that what works well for one child may have no affect on another child. Of course, what works well for that child won't impact the first child. The trajectory for one child rarely predicts the path and/or speed at which another child develops.

The only thing that remains the same across childen, across ages and across therapies is that the parents must remain informed and involved. Be supportive or be confrontational but be there.

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J.S.

answers from Stockton on

I have an 8 year old son (2nd grade this year) who was diagnosed with autism at age 3. He still has a lot of behavioral issues, but academically he does very well. We couldn't do the regular classroom after kindergarten because well, kindergarten here is only three hours a day, but first grade is double that time. He couldn't handle six hours in regular ed class. So he was moved into a special day class. He's in one for grades K-3rd grade, but there are no kindergarteners, only one or two first graders, and the rest are second and third. Total of 12 kids, One teacher, and two aides in the classroom. So basically four kids for one teacher. And typically the kids rotate out going to different things since it's a special day class, many go to speech therapy, Occupational therapy, adaptive PE, or are put into a regular class for certain times of the day, so usually the classroom only has a few kids and each teacher usually only working with 1-3 kids.
When my son was smaller he used to bang his head quite a bit when he got mad. He doesn't do that anymore. I'm not sure what kind of behaviors your son has that you're asking about. What does your son do that you are hoping he'll mature and outgrow?

My son still has his tantrums, rolling on the floor, hiding under desks, running away from teachers, hiding from teachers, screaming for as long as he can and as loud as he can, etc. I'm certainly hoping that many, most, or at least SOME of the behaviors my son is doing now he will outgrow. I'm sure it would look rather odd to have a 16 year old screaming and rolling on the ground because he doesn't want to do his classwork that day.

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A.B.

answers from Bakersfield on

Dear J., My ten year old son was diagnosed with ASD this year. Another name as you may know is Asperger's Syndrome. I raally reccommend the tapes and books of Dr. Tony Atwood, an expert from Australia. His materials give you hope and direction,and other important resources like Carol Gray's materials for social skills. My guy was in a special class for preschool and a regular Christian preschool at four. This was because of Auditory and Speech issues. In kindergarten and first grade, he went part day to the special class and part day to the regular classroom. He has never had an aide. In second through fourth, he has been in a regular classroom, but due to immaturity with his social skills plus a late birthday, we did fourth grade again this year. It has gone well, but we keep working at the next skill. Next year we will have a specific teacher with an organized classroom with our IEP, or we may use private school. Each year we talk and pray for the best situation looking at all the factors, and the special person our son is. When I am told things about how he will be in the future, I have to remember that only God knows what he can do and be, and if I try to worry about it all, I get discouraged. Get as much information as you can about your resources, and grab all the positives about your awesome young man, and trust God to show you each step of the way. I believe when we are given bigger challenges in our children it is because He trusts us more not less to walk in love through our challenges. Our son is a amazing, and fun person, growing and maturing as best he can. Our job is to love and grow with him. Your family will be in our prayers.

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T.C.

answers from Sacramento on

J.
You are a step ahead!!! You have an early diagnosis and a one-on-one aide early in your son's school career!!!
I was a one-on-one aide for a high functioning Autistic young man. He had received services from the time he was 3 - he was not diagnosed at the time, but there were major behavior issues. He was in a self-contained classroom through third grade (as far as the self-contained Autistic classroom kept the kids). In 4th grade he was in a self-contained resource room with all sp ed classifications, one teacher, one aide, and 12 kids. Evidently it was awful. "My" student has awesome parents. After 4th grade all students were expected to be main-streamed. "My" student's parents advocated for a one-on-one aide. I worked with a private contractor who specialized in discrete trials and behavior programs as well as the regular ed teacher, the resource teacher, and (my to the chagrin of the school district) the parents. And I used my own educational background, training and instincts to meld these together. I was with this young man all through 5th grade and transitioned him up 6th grade which is in the middle school. He was able to handle letting other people touch and check his student planner, pass papers, hear the intercom without cursing out the principal, handle fire drills, handle Picture Day, handle losing a game on the playground, handle walking in a crowded middle school hallway, going to middle school dances ... he is awesome. But he will always be "odd." :-)
Find out about "The Assessment of Basic Language and Learning Skills" (The ABLLS). Contact James Partington, Ph.D., at Behavior Analysts, Inc.; 1941 Oak Park Blvd. Suite 30; Pleasant Hill, CA 94523 to find a behaviorialist in your area. Be ready to be consistent. Be ready to work. Be ready to be successful.
One more thing - if your aide has not been hired already, see if you can be involved in the process. Stay in CONSTANT communication with the school, teacher, and aide. Be involved. There is no letting the school and family be separate in your future. You have to be a team. Someone needs to be the "hub." I love my student and his family. It was the most satisfying position I've ever had!
Good Luck!
T.

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J.L.

answers from Sacramento on

I am a teacher that has a high functioning autistic child in my classroom and this is what I have learned as a result of having him. Hope this helps.As he gets older he should be able to recognize when he is feeling angry and be able help control himself. I would recommend starting him off right away with charts----identify the feeling, identify why he felt that way and what happened as a result. Then, if it was a negative result, chart with him what some better choices would have been and the result of a better choice. Do this for all negative behavior, but also do it for positive behavior as well. And when you do this, sit NEXT to him so he can look at the paper. I know he can't read right now, but you want to avoid talking directly at him because then he will feel you are confrontational and that is too many sensory stimuli coming at him. Obviously, the behavior will not change overnight but you will have to keep at it. Eventually he will learn to recognize his feelings and begin to make better choices, especiaslly if you always sit down and do this activity.

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L.S.

answers from Stockton on

My son's behavior improved remarkably after treating his "leaky gut" (horrible digestive conditions due to mercury and measles viruses). He had less gas, inflammation,and pain.
The enzymes, probiotics, calostrum and omegas, helped to heal his condition. He improved as he was on the detox program to dump the heavy metals from his body. He has been the best behaved little boy since kindergarten.
Many of the children's behaviors are because they are in pain or in neurological distress. Yeast infections are known to give kids tons of behaviors as well.
Good luck.

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T.M.

answers from Sacramento on

Hello,

I have a good friend who works with Autistic children everyday and also have twins, both with Autism, one is high functioning (Asperger's) I can't remember exactly (sorry) which organization she works for, but she's a therapist and behavioral issues is what she deals with on a daily basis. If you would like me to get you in touch with her, please e-mail me at ____@____.com

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G.E.

answers from San Francisco on

what school district are you in? I am a LMFT but work as a behaviorist for children with Autism. At your son's IEP you can (and have the right on IDEA) to ask for behavioral support services. Your son is young and can learn SO much. The assistant will need to be trained in Autism. DO NOT wait until your son is older and is having social skills issues. He can be taught so much at this young age. Please get behavior services. Also he should most likely be receiving, OT, and Speech services as well. You must be an active member of your son's IEP otherwise services do not get implemented. I wish you the best of luck.
G.

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D.W.

answers from San Francisco on

My son is 10 and has Aspergers, and all indications are that he will do very well in this world. What our children need most is the space to develop in their own unique way, and not on the same time frame or with the same expectations as nuero-typical children. Many ASD children have sensory issues, and sensitivity to these triggers is also important. Much of your job as a parent will be about unlocking the doors to what makes your unique child tick, and you have just been handed the first set of keys. Use them wisely. Read, learn, and tune into your unique child. The more you understand him, the more you can help him.

Our children will learn to accomodate for their weaknesses, and will find their road. With our help.

I have participated in various forums for Aspies that have helped me a lot. Hearing what someone who grew up ASD has to say is really insightful. One such forum is wrongplanet.net. Even though it is an Asperger's community, many high-functioning autistics are members. I think you can find answers to many of your questions there.

I will ask you to look at your child as someone with unique needs, and not someone who needs to be "cured." While it is definitely worth exploring dietary issues, since many spectrum children do seem have their conditions complicated and magnified by food allergies or digestive issues, I am not a fan of many of the other treatments and theories some parents advocate, as they cause a lot of stress to the children, and are not scientifically sound (this is the type of input I have found in forums with teens and adults on the spectrum). Your child can thrive by being in environments that suit his unique needs, and by being allowed to use self-calming behaviors that may seem odd to us, but are very important to him. What you want more than anything is a happy child, and when you do not have that, it is time to look and listen to figure out what isn't working for him, and what is causing stress.

With my son, I have found that behavior issues are always connected to stress. If I can find out what that stress is, and mitigate it, then the behavior problem goes away. Stress can come from odd places with an ASD child: my son fears the flushing of toilets, for example. Locating the stress points ("triggers") is not an easy job, but it is essential, and probably the single most important thing you will be doing as the parent to an ASD child.

Many schools in the Bay Area have experience with ASD children and do an excellent job. If you don't feel your son is served well in the school where he starts, you should be able to find some solid options.

Finally, as another parent pointed out, consistency is very important for our children. Consistency has never come naturally to me, but I have learned to work on it, for my son needs clear and consistent expectations and scheduling to thrive. And it IS important to continue to hold high standards for your child, as also pointed out by another poster. Just be very careful to separate what your child really can do, from what you think they can do, because most ASD children react very poorly to stress and frustration.

I wish you both the best of luck.

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P.Q.

answers from San Francisco on

I have worked as an instructional assistant in an elementary Special Day class in San Jose for ten years. We serve mild to moderately disabled children in our program. We have twelve students with three adults. Every one of our children spend time in mainstream classes every day. They are assisted in small groups in the maistream by one of us adults. Now that you have my background I would like to make a suggestion to you. If your child has severe behavioral problems it is my contention that he does not belong in a regular classroom. I have seen children such as this and it is not a good situation. One child can be capable of shutting down instruction for all the rest of the class by virtue of his or her severe behavior. While legally these children have rights to be in a regular classroom we should exercise our best judgement and look seriously at a classroom like the one in which I work. With smaller numbers of students and more adults we are better able to address the issues of severe behavior problems. It is my opinion that in the end your child will be better served. You can begin conversations with the Special Education Department at your local school district. I know you will find the best placement for your child as you are asking the right questions early.

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D.C.

answers from Modesto on

Hi J.,

I am a mom of an 8 (soon to be 9 yr old with ASD). I understand your son is to be included in a regular ed class because he is high functioning, but he has severe behavior issues. I can say truly that every time my son has had severe behaviours they have all been health related. When we found out that he had protien allergies (very different from other types of allergies) and removed those offending foods, his behaviors dropped imensely. We also discovered he was having pre-diabetic issues. So first I would ask if you have done an IgG allergy test (this test is for food intolerances) and check his fasting blood sugar. This will rule out and give you tools to help alleviate external issues. At that point then you can see about behaviors. It is near impossible to train behaviours that are happening due to physical problems we can not see.

Each of our ASD kids grow and mature differently. They develope at thier own rate and learn so differently. The see things in life we do not percieve - so never underestimate what they understand.

Enjoy your little guy, he will help you to appriciate things you never even dreamed of.

D.

A little about me:

Stay at home mom (well unless you include all the running I do as a mom! I am gone more then I am home) of 6 - 17 yr daughter, 16 yr son, 14 yr daughter, 10 yr son, 8 yr son, and 6 yr son. Wife of the computer dude who is the love of my life.

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A.D.

answers from Sacramento on

Hi J.,

Have you tried contacting the M.I.N.D. Institute in Sacramento. I work there and although I am not directly involved with the Autism studies/projects, I would highly recommend getting in touch with someone there who is. The M.I.N.D is one of the leading research centers in the field and you are not that far at all. Here is the link if you are interested:

http://www.ucdmc.ucdavis.edu/mindinstitute/

Good luck,
Antoniya

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F.T.

answers from San Francisco on

Hi,
I don't have any children with autism, but I was researching it a bit and found this site. http://www.health-reports.com/autism.html?engine=overture...

I don't know if you've seen it before, but I found it very fascinating and could possibly really help.

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L.R.

answers from Fresno on

They grow up to be fantastic and wonderful!!!! Hi J., I have an 11 year old son, although his ASD was closed during surgery, he has transposition. He is also high functioning and an awesome kid. Remember, you are going to be his biggest advocate through his journey in school. Make sure that he has an appropriate 504 plan in place and keep in constant communication with his teachers. Remember, the earlier the intervention the better. Have the schools test him around 1st grade to see what other learning disabilities he may have. My son had to have OT at school due to problems with fine and gross motor skills. But with OT he was able to learn to tie his shoes and ride a bike. He couldn't do any of that until he was 9! A proper 504 plan will accomodate any needs he may in the classroom. Make sure the kinder teacher or any teacher for that fact is comfortable with having a child with an ASD (some feel uncomfortable). Find out who in administration places special needs children. Because that can make all the difference in what teacher he gets. And if your child cannot connect with that teacher, you have every right to have your child placed in another classroom. I have had lots of trial and error with this process and finally have it down. Now my son is flourishing. He has played soccer, run cross country and is on the year book committee. I can't stress enough being your son's biggest advocate in school. If you have anymore questions, I am here. L.

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S.R.

answers from San Francisco on

J., If your son has severe behavioral issues, he won't last as an inclusion student. I strongly recommend that you place him in special education which your school-system is legally obligated to supply. I know that you'd like your son to be in as "normal" a setting as possible, but this isn't going to work; not right now. Give him a chance to work with teachers who WANT to work with kids with special needs and who are TRAINED to do so. A regular school teacher isn't and they will pass the entire responsibility off to the aide who is usually an untrained nice person (not always untrained, but often).

There are some great after-school programs for kids on the spectrum that help with social skills and interaction. There is a great program called QUEST in the East Bay.

Don't get your expectations up about inclusion.

S.

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S.M.

answers from San Francisco on

Wow, you have already received some really incrediable advice from some vary knowledgable sources. My advice would be to have your child seen by an OT trained in Sensory Integration. I would recommend you have your child do this outside the school. My reasoning is that outside the school, you can have a whole hour for your child. Inside of school, the resources are limited, and many times as a group - which is also beneficial, but in a different way. My understanding is that every child with autism is aso a child with sensory integration issues. God luck, and you are already so fortunate to have an early diagnosis. S.

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H.J.

answers from San Francisco on

Helo J.,

I am a teacher and have worked with several students with ASD or Asperger's. I had them in 5th grade and the main thing I wanted to tell you is that there was almost always a night and day difference between the way they were in K and the way they functioned in 5th.

Some of my 5th graders were actually able to reduce time with their one-on-one or completely do with out them by mid-way through the year. I know that each child is different, but I wanted to let you know that there is so much hope for this condition, I have witnessed small miracles over and over in my classroom!

My most important advice would be to repeat what some other moms have said and that is to stay in constant communication with the teacher(s) and assisstants. As teachers we are often overwhelmed with all of the demands that are placed on us, that is why unfortunaltey, the squeaky wheel gets the grease. Parents like you have to make a full time job out of advocating for their children, but with you on his side, your son can shoot for the stars!

Some of the most rewarding moments in my carreer have been working with children like your son and I have had these experiences working in a public, mainstream classroom. Keep reaching for the stars and stay strong as an advocate for your son.

Good luck!

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E.B.

answers from San Francisco on

I am well aware I am not answering your question...I just feel compelled to share the info about an amazing doctor who is a DAN doctor (Defeat Autism Now). I know of families that were amazed with her results. I use her for my daughter who has some sensory issues and I too am seeing great results. You would need to actually speak to her to understand how she works. Here is her info:

Dr. Denise Tarasuk
51 E. Campbell Avenue
Campbell, CA 95008
###-###-####

P.S. I too am a stay at home mom.

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J.M.

answers from San Francisco on

Hi J.,
I am a teacher who works in special ed. In our district when there are severe behavior problems we have an ABA Specialist (I should know but can't remember what ABA stands for.) The B is behavior anyway they do programs mostly in the home and sometimes at school with our Autistic kids and I have seen some good results. One of the most improtant thing to do as a parent is be very consistent. I know that is very hard, but if you give in because you are to tired to deal with it (and we have all been there) the research shows a child will try it 17 more times before they get the mewssage that you are not going to let them do that again. Nip it in the bud the first time. Also I know it seems hard but children seem to rise to what we expect from them. If we are making excuses because they have a syndrome or some other problem that makes growing up harder we don't do them any favors. I know you will feel like you are being mean but if you can be calm, loving, and firm the child will get the message. They will learn what we (society) expects out of them. Autistic children usually just don't get social clues, and so that is something we at school are usually trying to train into them and can, but it doesn't come naturally, and although they can learn to do what they need to do, it is more like they realize the situation calls for a certain reaction and then they react not because they "feel" it. I don't know if I described that well. Has your son been going to school and has an IEP for having the aide in class? Parents Helping Parents is another good organization that Parents with special needs children can find support and resources. Don't know if this helps. Good luck and don't give up. J.

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L.C.

answers from San Francisco on

I am a first grade teacher in the public school system and while I have nothing against inclusion I do not always feel that it is the best thing for the student that is being fully included. I have had many experiences in my class room with autism and full inclusion and I work very hard to do everything I can for these students. But the truth is that the district does not provide me with the resources or education to do the best possible job. I highly recommend that you look for a program that specializes in working with children like your son, if not during the school day maybe an after school support program.

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A.R.

answers from Fresno on

Study nutrition. Jenny McCarthy has been doing research on Autism and nutrition (her son has autism and has shown significant improvements with a strict nutrition plan). There must be a hundred books out there, one I am living by is The Body Ecology Diet 9th Edition, by Donna Gates.

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G.D.

answers from Modesto on

Look up SNAFU in yahoo groups and there you will find other parents in your same situation and they can respond to that, I am about to have an IEP where it will be decided to go ABA school all the way or do the same as you!!! I know how scary the change is!!! Love, G.. :0)

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M.P.

answers from Sacramento on

Hi, my name is M. and my son is 10 and was diagnosed with Asperger's this past year. We had signs but it is often a hard diagnosis to come by. All the literature I have read says that the earlier you can start treatment, the better. There are several advocacy groups to look into. One local group is FEAT (families for early autism treatment), easy to google their website and get resource info.
Our biggest challenge as my son gets older is to integrate him into groups. Unfortunately kids will start to seem more different (eccentric) and sometimes bullying becomes a problem. We found a book called "Asperger's: What Does It Mean To Me?"; it helps the kids identify/label feelings of their own and others.
Also, keeping things organized and staying with a plan. If you start this early, you will be so much happier and so will your son. We have printed lists with times and jobs. Like, for morning routine: 0840, brush teeth, make sure you are dressed and ready to go to school; 0845 alarm will tell you it is time to go, get your lunch into your backpack, etc. I have a detailed list about afternoon routine too. Everyone knows what is expected and when....big decrease in stress for everyone!
Since we are just learning about autism ourselves I probably am not much help...one day at a time and patience is my motto. You get to be an extra special mom to a kid who will show you a new way to look at things/life.
Best to you all.

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S.B.

answers from San Francisco on

Hi J.,

I am currently an aide to a 5 year old girl with ASD. Have you tried a gluten and casein free diet? That has seemed to work for most of the children that I have worked with. They are no longer hyperactive and are more focused. Which means less behavior issues.

S.

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K.E.

answers from San Francisco on

My little girl is 6 years old and was D/x with Autism at 2yrs of age.I pushed and pushed for help and that is why we got early intervention for her.My daughter would not respond to her name.She would spin in circles NON Stop!,hide in small places,she had no concept of wrong or right ,hot or cold, danger or non danger,...just to name a few problems.We were a part of a wonderful program called Stepping Stones in her early days and we are apart of San Andreas Regional Center please look those up if you don't know about them.They are wonderful organizations.I never gave up on her and still have not given up on her.If you seen her now you would never know she was d/x with Autism.My daughter functions like most 6 year olds do.She rides a bike ties her shoes understands directions very well has no problem with eye contact and loves attention and hugs.She will soon mainstream into "Typical" 1st grade with "Typical" children.
Please remember NEVER give up and NEVER feel sorry for him.When he acts inappropriate fix the problem right then and there DON'T settle for less then the BEST.Our children deserve THE BEST like every other child in the world!!! when my daughter wanted something I made her point then when pointing was easy for her I made her say it.For example I made her ask "Apple",then Apple please,then "may I please have a Apple"? later I made her ask then get it for herself.I did NOT allow her to avoid eye contact and was NOT allowed to watch TV cause she would stand in front of it with her face almost touching the screen.Now she watches TV at times and will tell me that "watching TV does NOT make you smart it is bad for you".She is so GREAT & GOD BLESSED ME WITH HER! She is the eyes behind my head always watching her "8yr" and "5yr" old brothers and telling me when they are up to NO good.She is smart ,loving, compassionate little girl and I know she will graduate High School and move on to College and pursue a carrier in the fashion industry.She has talent in making clothes and a eye for fassion.As she says "I will be in fashion when I grow up,I will make clothes for models and normal people to wear".Then if she likes she can marry a Very Lucky Man and make a wonderful Mother!
please contact me if you have any questions for me I would be glad to help!
Almost 4-got,....Please incourage your school District to mainstream that will help him so much even a little at a time.Our children learn allot from other children and will mimic their behavior. K.

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