Wednesday, October 27, 2010

My Child Needs This But He's Not Getting That

"To understand the heart and mind of a person, look not at what he has already achieved, but at what he aspires to."  ~ Kahlil Gibran ~

I watched the HBO documentary:  I Can't Do This But I Can Do That, with my family last night.  As I watched it, I couldn't help to think of how my son's educational needs are inadequate in the current setting.  Aren has dyslexia in addition to PDD-NOS.  He could benefit greatly from assistive technology such as speech to text software tools.  Aren has significant problems getting his thoughts down on paper.  His efforts are at first grade level.  The constant realization is making me feel very raw.  When I think on it too much, I feel depressed and at times, sob uncontrollably.  Last night, was no exception, I cried as I watched.

Aren is well aware he is behind his peers.  It bothers him a great deal and I know it's affecting his self esteem.  When we were watching the program, Aren seemed engaged.  He was able to see there are other kids having similar issues and they are learning to work with it.  In fact, some of the kids are able to celebrate their differences.  They have the added benefit of being in a school environment that have the tools to help them work to their potential.  I wanted Aren to see that with the appropriate tools, his learning difference can be addressed.  As we watched, Aren said to me, "I have dyslexia, right?"  I acknowledged him and he started to feel sad but I immediately reminded him that he learns differently and with the right tools, it will make it better for him.

Yesterday, part of his homework assignment was to choose 5 words from the spelling list and write 5 sentences asking a question.  My son could only muster up 3 sentences and each one began with "what" and were 3 - 4 words in length.  Why is it that he is in 3rd grade and only able to produce rudimentary work.  Well, as expressed in my earlier posts, his educational needs are not being adequately addressed because of a mindset that my son is "slow to learn" and this is the "best we can hope for".  If indeed a child is "slow to learn" that doesn't mean a teacher takes a holiday.  It means there needs greater effort on the part of the educators and to bring in added resources to get the job done.  This is called an IEP:

A plan developed for an individual child who through educational testing is determined to have learning disabilities. By law, the child's educational plan is modified to accommodate the child's unique learning requirements
After coming off a horrible CSE meeting in June, I had Aren extensively evaluated over the summer.  In addition to the medical evaluations, we took Aren to the highly regarded NYU Child Study Center in NYC.  We were fortunate to have Aren seen by Dr. Elizabeth Roberts and Dr. Melissa Nishawala.  The doctors have a respectable educational background and expertise with children who have autism and learning disabilities.  The evaluation consisted of 3 intense days.  The first day was the 3 hour parent intake interview.   Following the initial interview,  Aren had two intense days of testing.  In fact, the testing was so thorough that by the end of the 2nd day, he was physically and mentally exhausted.  His immune system was compromised  from the stress and he developed flu like symptoms, IE headache, fever, nausea, etc that lasted for a couple of days.

On many levels, I felt badly I had to put my son through so much.  It seemed almost cruel and unjust.  Not to mention, the financial sacrifices we had to make.  We had to take our son for O/T over the summer and spent $888.00 in therapy fees and transportation.    That amount is small compared to the NYU study fees.  However, I knew my son wasn't mentally retarded.  And, I know his needs are not being adequately met in the current setting.  We were placed in the position to prove and pinpoint Aren's challenges.  In doing so, we expect to have Aren's educational needs appropriately addressed.  Aren needs to be in a smaller classroom with his peers; children with similar challenges.  As shown in the documentary, there are many benefits to an inclusive  placement.  Aren would have more opportunities to focus, receive intensive intervention and educational tools to assist in strengthening weak core areas.

Although I have been advocating for my son since infancy, I've been turning up the heat since Aren entered this school district.  As a parent, I know my child best.  Many parents will tell you when something is out of sync.  It's often referred to has a "gut" feeling.  I'm not interested in making problems for this school district, however, all dirt comes out in the wash and that can't be helped.  I want my son's educational needs met before it's too late.  His needs should have been attended to yesterday but I can't reverse the past.   I have to worry about now and the foundation or lack of it in the present.  I need for these issues to be resolved today.  I can't have my son's educational future short circuited due to a one-sided mentality or preconceived ideas about him.  I worry if race enters into the equation regarding the established mindset in this school district.  Disproportionately, African American children continue to be under educated compared to whites.  Statistically, African American children are diagnosed with autism and learning disabilities later compared to whites.  Yes, I will bring up the race card because, in this situation it might be a very important piece not to be overlooked.

"There also appears to be more confusion among clinicians between autism and other disorders in black children, compared with whites. In this study, black autistic children received more misdiagnoses than whites, and they were more likely to be misdiagnosed as having organic psychoses, mental retardation, or selective mutism. White autistic children were more likely to have been misdiagnosed as having ADHD"  ~ Nearly Two Year Delay In Diagnosing Autism In Blacks by Mary Ann Moon ~
I have to make a case for my son because he needs me to do it.  He can't do it for himself; at least not yet.  I will begin preparing him, however.  Although he is only 8 years old, he needs to understand how to advocate for himself.  I will not wait until he is 14, 16 or 21.  It begins now.  I can't shelter him from the realities of what his parents are required to do on his behalf.  It is his right to be part of and observe the process.  In doing so, he will begin to learn and understand.  I do this because, I'm his mother and I love him.

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