About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Tuesday, April 22, 2014

I just want to be the mom

I just got back from seeing a program for Matthew for next year, and i am so tired of leaving educational meetings crying. There is simply too much for one person to shoulder as I make these decisions for my children and too many variables for me to gather the necessary information to feel like I am making informed decisions.

Matthew has not had a great year this year.  he is in a classroom with four students, a teacher and 2 teacher assistants (4:1:2) , and since January he has been really struggling.  What I am hearing from the school staff is that he is struggling in response to the other children in the classroom, so they are recommending that next year he should be moved to a classroom with 6 students, 1 teacher and 2 teacher assistants (6:1:2).  The school staff feels like the peers in this group would be more appropriate for Matthew.

Certainly, the group Matthew is with this year is not the best for him.  However, last year he was in a 4:1:2, and he had a fantastic experience.  What I would like to see happen is for him to go to a 4:1:2  next year, and be mixed with a more appropriate group of children.

For the Fall, Matthew is most likely moving to a different school building which will be a large change for him. New physical surroundings, new people, new routines.  To decrease the support he receives at the same time that these other changes are occurrring seems to be a mistake to me.  It is simply one too many variables.

Additionally, in the program for next year, the classes are set up so that Matthew would have 1 teacher for english, 1 for math, 1 for social studies and 1 for science.  This adds in 3 extra teachers to Matthews day which is just more variables to cause stress or confusion for Matthew.

At our team conference, when the different teacher concept was introduced to me and his current teaching staff, the team for Matthew all seemed to be concerned that it was too much change for him, and we appeared to be closer to agreeing to a 4:1:2 for Matthew.  After our visit today, the team seems to be thinking that Matthew will adjust to the changing of teachers, and are planning to recommend a 6:1:2.  What are they basing this on?  Just a feeling.  A hunch.  They think the peers in a 6:1:2 will be better for him.  What if they are not?  What if he still struggles?  What if they are wrong?  They wont be there next year to deal with the fallout.  They wont be there as I struggle to determine whether it is the wrong class, wrong medications, or something else causing the struggle.

Now what do I do?  I have always felt like I know my boys best.  I have often struggled with the plans that make the most sense for them, but in the end my gut has been on target.  But what happens when the teaching team and mom disagree?  I can't seem to get an answer to that.  Apparently things are then decided at the CSE meeting.  Who is at the CSE meeting?  The teaching team, mom and a CSE chairperson.  So, essentially how is the decision made?  We discuss, we share our thoughts, and then what?  I don't want to be swayed.  I want Matthew protected 1 more year.  I want him to thrive before we change his classroom set up.  I want him to feel success.

I want to be just the mommy to my boys.  I don't want to be the educational planner or the  psychiatric adviser.   I don't want to be the one that does this all.  I don't know how to.  I am so tired of the fight.  I never know who I have made angry and who I have on my team.  How much disagreeing makes me "impossible to work with"  and how much makes me a strong advocate.   I am often misread when I am feeling emotional.  I have been told I come across as angry, when in reality I am feeling scared.  I hate to cry in front of others, or show emotions, and often as I hold in the tears, things begin to go badly.

Unfortunately, as I am struggling to make this decision for Matthew, I am just completing the process of having David moved to a different classroom for next year.   For 3 years I have suggested that David needed to be in a more restrictive setting.  For 3 years I have been told he was in the right class and was doing well.  Finally, this year I insisted that I wanted to see another option.  I wasn't ok with David doing "well".  I wanted him to thrive and to succeed.

What happened when i saw the more restrictive class?  It was perfect.  It is where he should have been for the past 3 years.  It is highly individualized.  Toileting plans and self help skills are built into the program.   Members of his current team actually commented that they didn't know why David wasn't in this group to begin with.  Why does it take so much fight?  Why does it take being so insistent? Why did I have to be the one to suggest the change again for David?  Why was it approved this year and not really entertained last year?  What has he lost that he could have gained by being in this more restrictive setting in the past?  Why didn't I fight harder then?  How do I get past my feelings of letting David down and regret that I didn't work harder to help him?

I am just a mom.  I can research and look at what programs are available.  I can do all of my homework, but no matter what i will never have the inside scoop.  I have to rely on the professionals to know the inside details, but sadly, they don't always have the knowledge needed either.

When the professionals are confused, what is a parent to do?  If I had been told today, "here is the class matthew would be in next year" then I could evaluate and we could make a decision.  Instead, we will know nothing until the end of August when classes are made. At that point it will be too late.  It is too much transition for Matthew and too much unknown.  I am trying to go ahead with blind trust and hope, but my gut is screaming that a larger class would be a mistake for him.

Our meeting to decide Matthew's placement isn't even until the end of May, so for now I just need to wait and see what continues to happen as this unfolds, which only causes me more anxiety.  I will continue to monitor how Matthew is doing in his current placement and to talk to his teaching team to monitor their thoughts, and see if we can reach an agreement.  Hopefully something will happen that will either make me trust that he is ready for the larger class or the teaching team will decide that a smaller class and fewer changes make more sense.

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