Questions yet to be answered

It is hard to believe that we are almost out of Early Intervention.  Where has the last 3 years gone?!  The next few weeks will busy ones as we transition out of EI and transition in to the local school system.  My little bug will be going to K3 in one short month from now!  We will test next week and then have her first IEP soon after.  I wish I could say that I am not worrying about the whole process, but the exact opposite is true.  I am terrified.  I worry about what the verdict will be for my daughter.  What is the testing going to reveal?  How will I handle the results? 

For the last year the word Autism has been mentioned.  My therapists brought this up again a few weeks ago.  As in "don't be surprised if they think she has Autism".  I value what my therapists have to say.  They have never steered me wrong.  They have many, many years in the field of therapy with pediatric kids. I am glad that they spoke up and told me what they think.  I certainly don't want to go into a meeting blindsided.  That statement has left me searching for answers again.   We have brought this very subject up with different professionals who did not feel that the diagnosis was appropriate at the time we were evaluated during the past year.  These evaluations occurred with 2 Down syndrome clinics and 2 pediatricians over the last year with the last eval being in Nov.  (4 different professionals) 

I thought that back at the end of the summer I was going to get K in daycare or some type of learning childcare program.  Searching for places left me on some waiting lists and ruled out quite a few places.  We had it narrowed down to a few places that we really liked, but the class size I felt were too large for K to get the attention she needed.  So I did nothing.  I let her stay where I felt she would be happiest and safe--with my mom.  I cannot change my decision.  I did what I felt was right for my daughter at the time.  She hasn't had as much structured "learning" time as Kiley and I should have given her.  I am praying that she will get to school in the next few weeks and will be able to adapt without too many difficulties.  Of course I am thinking that I have hurt her in her learning processes by not letting her go to a daycare, etc.  We will know soon enough just how well she will be able to adapt in a structured environment.

In therapy, K likes to look at books.  She has only showed an interest in some toys in the last month or so.  We do puzzles and blocks during therapy time, but books and pictures are her favorite things and she prefers that over anything else.  She doesn't like to make eye contact with us.  We can call her name and she will look sometimes, other times, she is looking every which way but at us.  Same with therapy.  She will not focus if it is blocks or puzzles.  She may look at the puzzle pieces, but she won't try to put them in the right place.  She does seem to be in her own world often and is content with that.  She doesn't like when we laugh loudly, she starts crying when we do that.  When I sing and sign to her, she pays great attention to me.  She tries to imitate the signs I am doing.  She is only following a few simple commands and only when she wants to.  She doesn't have a problem being around other people.  She doesn't cringe in new environments.  She does have some eye issues, with squinting, crossing her eyes, rolling them.  Her glasses are being ordered, so if those problems get better with the glasses, we will put it to her vision.  If not, is it an Autism thing or a neurological problem?  She does have a diagnosis of Infantile Spasms (seizures)  Her last EEG and MRI were good.  Her neurologist told us at her last visit a week ago that she has a high risk for relapse.  The symptoms to look for are some of the same as what can manifest as Autism signs.  (the lack of focus, the delays)  Add the Down syndrome to it all and we just have a big mess!

So what can we say is the cause of all this?  Is this a new diagnosis to deal with?  Is this just from her seizures?  Is it that she is more profound in her Ds diagnosis?  She has done so well in so many areas.  She walked at 19 months when she had only just learned to sit herself up at 17 months and crawled at 18 months.  She made excellent progress with feeding herself and drinking from a cup with a straw well before her 2nd birthday.  But those are just developmental milestones relating to some gross motor skills and maybe learning a few fine motor skills.  Her speech is lacking.  She can speak, but only when she wants, not when I ask her to.  She will sign but it is random, not on my command.  She is falling behind.  I don't think she has regressed.  I think she has retained everything she has learned.  She just doesn't seem to be learning anything new.  So, I think we are going to have some serious discussions with doctors and school staff on whether we should be pursuing an Autism diagnosis or not.  First, let me get through her testing and IEP and lets see how she does with a structured environment. 

This is what has been weighing heavy on my mind for the last few weeks as we enter this transition period.  Praying that I will find peace through this process as I search for the answers to all these questions.