The Importance of Documentation When Raising a Child with Special Needs

Last month, Sunshine was evaluated by a psychologist.  The purpose of the appointments was to obtain current adaptive and cognitive scores for her.  Scores were requested by the state in order to determine if Sunshine qualifies for OPWDD (Office for People with Developmental Disabilities) services.  

Last year she was denied.  The state felt that her adaptive skills did not impact her daily functioning.  We were disappointed, because getting services through OPWDD opens up a number of possibilities for Sunshine and supports for our family, if she qualifies.

So, we tried again. The psychologist we met with in June, determined that Sunshine has an abbreviated IQ score of 91 on the Stanford-Binet Intelligence Scales, 5th edition.  This is HUGE as no one thought her IQ would be this high.  

Her adaptive behavior score is in the extremely low range with a GAC of 63.  This came as no surprise to us, as we observe her adaptive functioning on a daily basis.  All paper work has been sent in to the state.  We're waiting to receive a letter of approval in the mail.

Our developmental pediatrician was very exited to receive the scores from the psychologist as it's the last piece to the puzzle in confirming that Sunshine definitely has autism along with several other diagnoses.  The gap between cognitive and adaptive scores is a classic sign.  She knew that the autism was there before the scores, it's just always nice to have more evidence.

We received a copy of Sunshine's scores to give to our developmental pediatrician before we received the actual report from the psychologist.  My elation over the scores, confirmation in diagnosis, and possible OPWDD services, quickly faded as I read these words,

"Long term social adjustment will be dependent upon Sunshine working to normalize herself in social circumstances.  This will include her working to attend school.  Continued isolation will not help develop coping skills in stressful situations, it will likely promulgate avoidance.  Academic planning should include an Individualized Education Program (IEP) to address her specific needs. This may include but not be limited to a smaller class size, breaks between assignments, strategic classroom seating, and behavioral support."

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The same psychologist assessed Dinomite in the fall for continued OPWDD eligibility.  In the recommendations section of the report, the psychologist mentioned socialization and attending school as well.  Words were written in  a kinder way, but they were still there.  

Recommendations were discussed between the psychologist and I during the final meeting about Dinomite, and also while meeting about Sunshine.  I thought we were on the same page by the end of both meetings.  Especially since concerns were brought up by the psychologist during meetings in regards to socialization of Dinomite and Sunshine.  Our methods of homeschooling were not discussed in depth either.

I had asked the psychologist what socialization meant?  In my opinion, there are many ways to socialize.  In school, children are asked to sit at desks, next to peers, raising their hand when wanting to speak, in response to a teacher's question.  There is a chance to socialize with other children at times, but it's with children who are all the same age.  

My children have been and continue to be involved in many extra curricular activities.  They are provided opportunities on a regular basis to socialize with children their age, but also with those who are older and younger than they are.  

Due to autism and other varying special needs, my children all have deficits in the socialization area, not because they don't go to school, but because that's part of the diagnosis.  We continue to work on developing socialization skills both in and outside of our home classroom, in hopes that they will thrive in the future.

When I read Sunshine's report I was quite taken aback by the wording of the recommendation, especially the words "continued isolation."  I was fuming!  When I'm angry I cry.  The report arrived in the mail on a Friday.  After reading it, I put it away and did nothing until Monday.  Perhaps I was overreacting?  On Monday when I read the report again, my anger and frustration had increased.  I was crying all over again.

There are several things I could say about this psychologist.  I could go into detail about what I really think about the report.  Aspects of professionalism, opinions versus facts, etc. all have circled through my mind a million times over and back.

The bottom line is this report is written by a psychologist with a Ph.D.  Though only 3 hours total were spent with Sunshine and I, the psychologist deemed it necessary to include the paragraph that I quoted above, in the report, in the way that it was written.  

This report is legal documentation that can be used in court at some future date, if and when Sunshine's behaviors worsen and she gets into trouble.  As her primary caregiver and parent, I am responsible for following through on recommendations from doctors and psychologists.  

Since Sunshine has RAD, autism, and a few other diagnoses, the chances of legal or family services involvement is quite great,since here behaviors are likely to worsen as she gets older. 

To clarify, I know I don't keep Sunshine in isolation.  It's quite the opposite actually.  We do almost everything as a family.  Jason and I have babysitters who come and watch the kiddos one time per month.  The rest of the time the kiddos are with us.  They do what we do. When an activity isn't appropriate for one or more of the children, one parent may stay home, while the other goes to a particular event or activity with the other kiddos.

My biggest concern with this report is that it has leverage, despite comments being completely unnecessary and inappropriate.  I reread the report several times.  I spoke with our OPWDD worker.  I spoke with other mothers of adoptive children who homeschool.  I pulled out previous reports from our developmental pediatrician that specifically state the opposite recommendations written in the report by the psychologist.  

Finally, I called HSLDA (Home School Legal Defense Association).  Support staff and lawyers through HSLDA have been extremely helpful to us, when navigating through different aspects of homeschooling, in regards to our rights, the kiddos' education, and working with the school district.  One might not think it would be necessary to work with lawyers while homeschooling, but I'm here to say, I don't know what we'd do without them!

HSLDA did not disappoint.  The first aspect of the report they laughed at was that Sunshine is 3 years old!  No child is required to attend until 6 years of age.  In that regard, a recommendation for schooling right now is completely inappropriate.  The fact that we are schooling her at home now, is HUGE!  We are going above and beyond what would be expected from any parent.  

Another aspect of the report they discussed was that we are seeking out OPWDD services for Sunshine.  The very fact that we're seeking services proves that we're asking for outside help and therefore are not isolating her.  In regards to the recommendations that completely go against what Sunshine's developmental pediatrician has and continues to recommend, we have all of the documentation from the developmental pediatrician to dispute any recommendations the psychologist wrote.  

Our developmental pediatrician has seen Sunshine almost every 6 weeks for the last year.  She knows the case better. She knows us better.  (We've worked with her for over 4 years.)  She is also very supportive of homeschooling and reviews what we do with the kiddos on a yearly basis.  Because we continue to see our developmental pediatrician regularly, documentation will be provided in any circumstance we may need it.

The representative from HSLDA made two recommendations before our call ended.  He knows we document all of our homeschooling journey on the blog.  This is how Every Star Is Different began.  I wanted to be sure I had documentation of all we do, so that if we were ever questioned by the school district, I would have everything prepared to dispute any questions or concerns.  Now, it's time to document all the other aspects of our lives too, including social events, daily activities, etc.  

I used to blog about all of these things at Renae Today, my private family blog, but I stopped towards the end of last year.  I'd been meaning to blog about all of our fun adventures on Every Star Is Different on a weekly basis, but as always, there's just never enough time.  Providing documentation is a great motivation, especially when it means protecting my children and my family from any who are not supportive of the lifestyle we have chosen.

The second recommendation was to seek out a new psychologist.  Bulldozer is in need of an evaluation for OPWDD services by the end of the year.  Sunshine will need another in the future as well.  The representative from HSLDA compared choosing a psychologist or any specialist to choosing a pediatrician for your unborn baby.  Study it out.  Ask for recommendations.  You want the best for your child and no less.

This is not the first negative experience we've had with specialist for our children.  It was recommended that Princess see a psychiatrist at the age of 3 due to her RAD.  The psychiatrist we went to tried to diagnose her with autism and put her on some heavy anti-psychotic medications.  Had I not had two older children with autism and knew the difference between RAD and autism, my daughter could have been misdiagnosed and put on medications that were not necessary and could be potentially harmful to her.

I write about this not to attract attention, or for empathy and sympathy, but to educate others about real situations that can happen.  I know I'm not alone, since we have many friends and acquaintances who have shared their horror stories of unsupportive or incompetent health care providers, educators, etc.  I can not stress enough how important documentation is when raising special needs children and/or when homeschooling.  

Don't know where to begin?  Document everything!  Save reports.  Save records.  Take pictures.  Keep a journal.  Meet with doctors and specialists as often as they recommend.  If you're not happy with your care, study out other doctors to find one that can provide the support you need.  Do what you need to do to protect your family!  It will be worth it.