Wednesday, September 14, 2011

Challenges with Autism


When Elizabeth was diagnose as Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) we weren't certain what it would mean for us.  And the truth is, taking care of Elizabeth isn't always easy.  She shares the same dentist with all of us finally, and she shares the same pediatrician as her sisters, but dealing with her main issues requires a few extra doctors.  First, she has Amblyopia, this means that she used to see significantly better out of her right eye than her left eye.  In fact, she was slowly going blind in her left eye - we discovered this at age 4 and we've been patching and doing glasses since then.  Second, she has allergies and they trigger Asthma.  The technical term is Allergy Induced Asthma, so we need an Allergy and Asthma specialist for that because when it's cold and flu season if she catches it, it goes straight into her chest.  This also means that everyone except Sarah gets a flu shot every year.  Sarah is excepted because the flu shot makes her very sick and she sometimes ends up with pneumonia.  Finally, we have a specialist who is good at the diagnosing the Brain and who specializes in Pediatrics too.  In Kansas we went to see Dr. Valerie Kerschon every two years so she could check on Elizabeth's progress and she is the one who made the original diagnosis.  At the time Elizabeth was only four so she was too young to diagnose Attention Deficit Disorder (ADD) so we'll be getting that checked out as soon as we are able to tag our minivan with Washington plates.

I don't know if all other parents deal with these issues, but these are some of the problems we deal with in our family.  We also had to decide whether or not to medicate Elizabeth.  At the time of her first official Individual Education Plan (IEP) they started talking medication and I stopped them cold.  It wasn't that I was opposed to medication, I was opposed to medicating Elizabeth when she was the size of a two year old and so small for her age.  By first grade though we'd exhausted all non-medical options and she had had time to grow and in truth had gained quite a bit of height and weight, so we sat down with our pediatrician and discussed medication options.  Dr. Harrington chose Strattera because it did not affect appetite and it should cause any more delays in her growth cycles - all of which are very important since Elizabeth is very small for her age.  She is 10 years old now and her friend at our apartment complex who just turned 8 years old is as tall as she is - so I think you understand our concern - she's very small.  

We are now facing the fourth grade and she is acting like a typical fourth grader.  She squirms in her seat when she should be working, she isn't quite ready to accept responsibility for her actions - all of these I recognize because we struggled with Sarah in the same areas when she was a year older.  We also faced the dilemma of whether or not to keep her in public school.  After a lot of though and careful prayer I opted to keep her out of public school in a sense.  We are preparing to get everything rolling on Washington Virtual Academy - all of the paperwork has gone in and today when I checked it out, I saw the word PENDING on the last few items that needed to be sent in.  This means sometime in the next week or so we should be receiving books and materials from the school.  I am thrilled.  I think it would be better for Elizabeth and for myself to have a teacher to keep us both accountable - it provides a little more structure for her and for me and I don't have to grade her work, a teacher does that.  It will help keep a line between me being Mommy and not being her primary teacher.  She misses her friends and she does get somewhat lonely, but she isn't  completely burned out by the end of the day now.  The nice thing about a good public school that has a good special needs team like when we lived in Kansas and she attended Spaght is that they can do some pretty awesome things with your child, the key is finding just the right school.  I spent days praying before I went to the Choices Fair in 2006 to pick a school for Elizabeth.  By then we knew something was wrong but we didn't have an official diagnosis yet and it was in a few minutes of speaking to Mrs. Silveous and Mrs. Hall that I knew it was the right choice of school for Elizabeth.    As it turned out it was the perfect school for Elizabeth.   Now that we've moved though I don't feel like Madison is a good school for her.  It isn't that I don't think the teachers can help her, it's just too much for Elizabeth.  She had a terrible time making friends, making the adjustment to being in Washington, and she digressed quite a bit and I felt as if I wasn't listened too.  We also have found other options for socialization for her.  We are going to enroll her in Camp Fire Girls this year and there is also a Junior ROTC program we found out about that is only $10 a month and it's a structured setting and it would teach her how to work as a team and with others.  So social skills are not going to fall to the wayside and since she won't be so overstimulated it should go much more smoothly than before when we tried.

In the past, we tried to do Caravans with our church.  The teachers were lovely women, but they didn't know what to do with Elizabeth and by the time Elizabeth would come home from school she was pretty much spent.  So doing another activity that required she sit still was not really an option - at least not a good one for her.  Now I can tell that she isn't as overstimulated.  She is able to play with her friends by the end of the day with hardly any meltdowns and that is only after the first week of schooling at home.  I have high hopes for Elizabeth to do well this year and I think the one on one with me at home will be good for her and enable her to make more academic strides.  But I have to say, this wouldn't have been an option without an awesome special needs team at Spagth Elementary School.

I hope you all have a good rest of the week.

In Christ,
Maureen



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