Support for a Child with Hypotonia.

My daughter's disability is mild.  When people first meet her they don't know anything is wrong.  She is very cute and bowls you over with her incredible smile.  Then they spend more time with her and they start to see something is wrong but are not really sure what it is.  I have often told parents that she has a Muscle Disorder and I get a kind of "oh, so that is it" reaction.  I am fine with that.  Hypotonia can be mild to severe and can come with a host of other issues.  I am glad my daughter doesn't necessarily wear her disability on her sleeve.  But it doesn't make me worry about her any less.  

Last year my daughter's pre-school teacher suggested that I have her evaluated by the school district for Physical Therapy.  I had her evaluated.  She scored very high on the Psychological piece and marginal to low on the Physical Therapy piece.  The PT said that she had flat feet and it was causing all of the other issues.  Order these orthotics and in a month you will start to see some improvement.  Let's just say that was WRONG.

Long story short she did not qualify for Special Education services within the school district.  Despite the fact that the PT did not evaluate her in a classroom setting and was totally wrong with her assessment they said her Physical Limitations did not impact her ability to learn.  My daughter can not stay seated in a chair for 5 mins and IT DOES NOT IMPACT HER ABILITY TO LEARN?  Come on!

I ultimately made the decision to enroll her in another year of Pre-School.  I felt she wouldn't get the support she needed to survive Kindergarten.  I want her to like going to school and overall be happy.  This won't happen unless she gets extra support at school.  I realize that budgets are tight and there are lots of kids with much worse disabilities than my daughter.  But at the same time my daughter is the type of kid that is destined to slip through the cracks her whole life and I don't want that to happen.

So we are at that time of year again and I have to make the decision about Kindergarten.  I cannot hold her back another year so I have three options.
1) Send her to public school - free
2) Send her to the private school (small class size) where she goes to pre-k - $6,000 (that is on top of the $4k we just paid for an third year of pre-school)
3) Home school - not really an option b/c I would lose my mind

I am currently in the process of having her evaluated by the school district again.  We have gone through a lot agony, time and money getting a diagnosis for her.  I have been told this will help her get special education services.  We will see.  I am still faced with what is in the best interest of my child.  I am grateful that we are able to afford private PT and enroll her in private school.  For some that isn't even an option.  At the same time we make a lot of sacrifices to do this and I wonder how long we can keep it up.  It also makes me wonder how many kids out there are slipping through the cracks.  For them there is no support.  Very sad.