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!

Sunday, September 29, 2013

David Update

With David I often find my heart lives in my throat- you know the expression your child is like allowing your heart to walk around outside your body.  That for me is David.  I love Matthew and Jacob, but they have more of an ability to care for themselves at a basic human level.  With David, he shuts down.  He worries, but you only know this through his actions, not because he will talk to you about it.  The best I get from David is a shake of the head yes or no when I ask leading questions.

David changed schools this year because his skills class is in a new school building.  For the past 3 years he had the same teacher, in the same school, in the same classroom.  This year he moved to a new school, new therapists, new everything except for his PT stayed the same.  Since school started, David  refused to get dressed one day, and only got dressed after he missed the bus and I promised to drive him and introduce him to my friend the school nurse.  The next day he tried packing everything he owned in his backpack.  We finally settled on him taking his stuffed Mickey Mouse because it came down to that or another fight to get him on the bus.  This morning I came downstairs and he had washed the entire kitchen floor, cleaned the whole kitchen and was just obsessively putting things away.

No 9 year cleans a kitchen unless something is wrong.  this is to say nothing of the fact that he cleaned it with Murphy Oil Soap- so EVERYTHING is a slip sliding mess!  After working to clean the floor from his cleaning, I again tried to find out from David what is wrong.

Is he liking his new school?
Is he enjoying his friends?
Does he like the playground?
Is the work too easy?
Is the work too hard?

I can get no answers....I asked him about home, and he said he wants more time on the IPAD, all kids want more time on the IPAD.  No kid is so anxious about not having enough IPAD time that they will clean a whole kitchen and take a huge stuffed Mickey Mouse to school with them.

We went to see Dr Griffieth, a local Developmental Pediatrician, on Tuesday this week.  As we met with him he expressed concern that David is struggling with a version of selective mutism.,  I am not certain that I agree with this diagnosis.  I do however know that David cannot typically communicate on demand.  If you ask him an open ended question, you are almost guaranteed to get no answer.  He will often answer yes/no questions, but anything more than that and he just sort of stares, waiting for you to give him choices.

Is this selective mutism?  Is this a lack of communication skills?  Does David struggle with word finding challenges?  Does he struggle with anxiety?  I don't know.  For most of these things, the test is talking to a child.  How do you answer these questions for a child who doesn't talk?

Over the weekend David has been a little more talkative than he was all week, and we have talked a lot about the upcoming school week.  He had some time with my parents, just the 3 of them, and I am hopeful that this quiet time and space was helpful to him to help him feel more at peace and relaxed.

His teachers and therapists are working with me to determine if a sensory diet of some sort will help David to feel more relaxed and calm in the morning as he enters school.  He seems to be adjusting each day by the afternoon, but every morning he is struggling with his body being unregulated.

My biggest hope for David is that one day he will have the confidence and abiltiy to clearly express his thoughts and hopes.  No parent knows exactly what the future holds for their child, but for parents of children with special needs, the unknown seems to be even more unknown.  My best guess is that David will hold a job with the support of a job coach or mentor, but I don't know if David will live independently.  David's ability to do math is still below that of your average 3 year old, so things like money management, time management, measuring and cooking are not skills that he has, and are not things that i have a grasp as to how much growth potential he still has.

I was hoping that Dr Griffieth would use his crystal ball and tell me that the future would be ok.  That David would gain skills A, B and C and would eventually marry, have children and work in a grocery store.  Unfortunately, there is no chart to graph where David will end up in life, and I am struggling right now with this fact.  I know that I will support him and ensure that he becomes the best David he can be, I know that when he feels loved and supported and accepted he does best.  I just wish that I could get a little glimpse into the future to keep my anxiety at bay!

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