My story is about Luke, my son who is now 7 years old and in 1st grade.  When Luke turned 2, he quite suddenly started displaying behaviors that concerned his day care teachers.  He was quite an intense youngster, bowl you over with all emotions - positive AND negative.  I remember describing him as a body rocker / head banger.  Constantly seeking stimulation.  His body rocking was an effort to calm.  Head banging could be due to frustration or an effort to calm.  Day care staff shared their concerns and asked if I'd had him evaluated.  Evaluated for what???  They eventually kicked him out because he was a safety risk for the other kids.

I blamed the day care.  They had young, inexperience teachers who didn't even have kids of their own.  They just didn't know how to handle my special / intense little guy.  So we searched for another day care center and found one who used liscensed teachers along with assistants.  It was a terrible struggle for the first few weeks, but he settled into the routine.  Then he moved to a new room and all heck broke loose.  Meltdowns where chairs, tables, and large toys would be flung at anyone & everyone.  Again I was questioned as to whether I'd had him evaluated, with never an explanation as to what that meant.  I'm not even sure they new exactly what they were asking.

Time passed and the staff kept trying to work with him.  He moved to another room with a teacher who seemed less than patient and he got worse.  He would cry at drop off time and try to follow us out of the room.  Shortly after that he was kicked out because he was a safety risk.

This time I coulld not blame the teachers.  I had learned a lot about my son while he was there and understood that most of the teachers were helpful and trying to make it easier for Luke.  So I started to look into what was wrong with my child.  I looked into ADHD, Sensory Processing Disorder, and a little into Autism.  None of them seemed to fit him.

He had a very brief stay at a 3rd day care and then I hired a nanny.  While he was home I learned about how food additives can affect behavior, so I drastically modified diet.  That showed mild positive results, but now I believe the results were more due to him not being in a larger group of kids with too much stimulation.

I also began to use bio-med methods to try to fix him.  At one point I had him taking 12 to 15 pills a day, all endorsed and / or recommended by his bio-med doctor.  None of those pills fixed him.  He still had major meltdowns and many other issues most kids don't have.

We eventually took him to a psychologist (in the start of Kindergarden), who diagnosed him with severe ADHD.  In late October of that year, we admitted him to an out-patient program in a hospital psych ward, due to extreme violent behaviors.  He was diagnosed with Asperger's Syndrome.  I was stunned.  Not my child.  I continued to try to fix him, spiralled into my own depression and had major anxiety related to foods and supplements.

Fast forward to the summer between K and 1st grade.  Our school provides a tuition based care program for before / after and non-school days.  At the end of K, me and a few of the teachers met with the program director for this program, which I will refer to as VS.  We wanted to share some of the strategies we'd found that worked to calm Luke.  The director urged me to contact an organization that provides funds for extra VS staff, essentially an aide for Luke.  So I submitted the paperwork, thinking that the only thing I needed was an aide.  But then I hear of all of the other wonderful things that can be done for kids with developmental delays.  It took quite awhile, but we developed a person centered plan for Luke.  He has access to an OT equipment lending library, the potential for in-home sensory equipment, an aide for VS, and many other things.  Parents have access to behavioral planning aid, autism conferences, autism support groups, background-checked respite providers and a small annual allowance, and many other things.

Now we've entered the "how to help" stage.  I spent a long time in the "what's wrong with my child" stage and was not happy.  Not only that, neither of my children, nor my husband was happy there.  With a LOT of effort, therapy for me, and education - we have officially entered the "how to help" stage.  I am no longer trying to cure my child, but looking for ways to help him succeed.  We have only recently fully emerged ourselves in this stage and have only begun exploring and setting up services.  But we are all happier than we have been in years.  I am finally looking forward to this adventure of raising Luke, instead of dreading what problem will come up next.

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Comments:

eilenej1
Apr. 6, 2011 at 10:59 AM

I meant to share information about a wonderful group here on CafeMom.  The Autism/Asperger's/PDD Awareness group is a wonderful place to go for help, support or a shoulder to cry on.  If you love someone with Autism, or someone you suspect has Autism, please visit the group.

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qwiet...
Apr. 6, 2011 at 7:57 PM

Thanks for sharing your story . . . I'm glad you guys are in a good place right now. Stay strong :o)

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Roseh...
Apr. 6, 2011 at 11:16 PM

Bump ... Your story is very much like mine.

I knew my son had a problem but one ped after another blamed me. Then he was misdiagnosed with ADHD/Bipolar. He didn't get his HFA diagnosis until he was almost 11. We have so much catching up to do.

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LilyP...
Apr. 7, 2011 at 12:43 AM

Thanks for sharing your story. Luke has a great Momma and family standing by his side! 

He'll do well! My friend has a son whom is high functioning and guess what? He has made the National Honor Society for two years in a row in Junior High.

So GO Luke!  

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Lb128f
Apr. 7, 2011 at 6:42 PM

Thanks for sharing this! You sound like a great MOM!!

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bupkie
Aug. 3, 2011 at 10:01 PM Hugs!!!! You're doing Great!!!!!

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