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!

Saturday, April 21, 2012

CSE meetings, premeetings and too much for one mom

Once again my brain is full, and I feel that I am spinning my wheels and moving too quickly but going nowhere.

I am preparing for Jacob's transition to kindergarten CSE meeting and Matthew's transition to 6th grade CSE meeting and neither of these meetings is going to be easy.

As the director of a Nursery School, I feel like I have a good sense of what an "average" 4 or 5 year old is doing.  I couldn't tell you when children start to write their names, but I can tell you that it is a rare child who leaves preschool  not yet writing their name.  There are no hard and fast rules for when children recognize letters and numbers and learn to count to 20, but these are things that most children are doing these days before they enter Kindergarten.

Some of the reasons that I kept Jacob out of kindergarten last year were because he was not yet emotionally at a place that I felt he was ready for kindergarten, but additionally, he didn't have the basic skills of recognizing any letters, writing any letters or counting to 10.  Now, it is a year later, and I feel like we are not that much further ahead.  While we have worked on him writing J-A-C-O-B, he struggles to write any of the 5 letters consistently except for the O.  His teachers and I have worked with him on letter recognition, and while he at times can recognize the letters after working on them, a day later it is like he never learned them. 

Additionally, I am taking Jacob to karate class 3 times each week, and each time it is hard to watch him struggle.  So much of what they do in Karate is dependent on knowing your left and right- step back with your left foot, right foot forward, right hand out.......Jacob is very adept at covering up what he doesn't know.  He watches all of the other kids and tries to figure out from them which hand is which.  He delays moving until he can really see from the instructor what he is supposed to do, which puts him 3-5 seconds behind the rest of the kids in the class.  Simply by being able to be alone with him at Karate, I have had the opportunity to see how hard it is for Jacob to do what many other kids just learn to do easily.

Jacob  is currently receiving OT, speech therapy and one session per week of play therapy, and so I met with his therapists and his teachers a few weeks ago to gather information about where we thought Jacob was and how to best get him ready for Kindergarten.  At the meeting the concern was raised that Jacob was having trouble with motor planning- essentially if Jacob is asked to do something-ie  make a "j", what his brain tells his body to do is often misinterpreted, or creates a struggle for Jacob and the motor movements come out wrong.  This makes life for Jacob hard, and the hardest part is that he is aware that what he is doing isn't correct but he cannot figure out how to fix and compensate for the motor planning challenges.

So now, I am preparing for Jacob's transition to Kindergarten meeting, and I know that I have a 5 year old who will not be as ready for kindergarten as many of the other children who are entering kindergarten with him.  I hate to see him struggle, and would do anything to get him caught up and on target before he enters kindergarten, but unfortunately his learning challenges are going to take time and repetition to work through.  I am hoping that at his CSE meeting we can get services approved for him for the summer time so that he can have more time to work on the necessary skills as he gets ready for kindergarten.  Unfortunately, with budget cuts the way they are, I don't know if Jacob will get approved for services, so I have to work hard to make the case for why the services BEFORE he enters kindergarten are essential.

For Matthew's meeting I feel like I am getting the run around.  After many phone calls, I now know that the district is thinking that it would be optimal for matthew to go to a program for 6th grade that is outside of the district.  However, his meeting is on May 3, and I was supposed to have an opportunity to see the middle school program at Bethlehem middle school, and I want to see programs outside of the district so that I can see what options are available to me.  However, it is now April 21, and after many, many phone calls I still have not had the chance to see any programs for matthew.  This leaves me very little time to go see programs and make decisions for matthew.

I don't know exactly why the district feels that there is not a class for Matthew at the district Middle school- it looks like from what I have read that he would have to spend a portion of his day in the mainstream classes, and Matthew has never done this because he is not ready to succeed in mainstream classes cognitively or behaviorally, however I am surprised that the district doesn't have a special education class that would allow Matthew to be at the middle school without mainstreaming.

Unfortunately, the more  time goes on before I have his meeting, and without being able to see the classes that are available, the more my anxiety is  increasing.  It is a challenge to know how often to call the school, and to reach out and remind them that I would like to visit possible classes for Matthew, with also recognizing that I know that the district staff is dealing with many families, and trying to balance the needs of everyone.

Patience is not something I am very good at, and especially as my anxiety increases, my ability to be patient decreases, but I am working hard to remember that in good time, decisions will be made, and that I am working with a district of full of people who I trust and have worked with successfully in the past.  Here is to knowing that decisions will be made, and both boys will get the support they need in good time.

3 comments:

  1. karate three times a week seems like a lot of pressure, dom goes once a week and loves it, the teachers know all about his diagnosis and pay extra attention to him each time, he comes home very happy and not that frustrated. we go to us budokai in colonie, love it - $59/month once a week!

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  2. I think the 3 times a week are really good for him, the repitition seems to help. This is where it gets hard, without a diagnosis or confirmation of what support will help, it is hard to explain to others what Jacob needs, but to watch him struggle is always hard as the mommy.

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  3. We go to Dewey's in Delmar, and I love the owner- he is truly amazing with children.

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