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, January 15, 2013

Matthew is coming home and a new school

Today's rollercoaster ride had the highest highs and the craziest lows that I have ever had in a 12 hour period.  I spent my morning touring George Washington Academy for Matthew.  The classroom he would be in would have 4 kids, 1 teacher and 3 or 4 aides.  I figure that is way better than our ratios at home or anywhere else he has been!  I loved the teacher, and I liked her description of the classroom.  The classroom is taught at a second grade level which is appropriate for Matthew.  The high of possibly being on a positive track for Matthew felt so good. 

This afternoon however things took a nose dive.  I had a meeting with the Psychiatrist at 4 Winds.  When he arrived he sat down and asked me why we were meeting.   I didnt call the meeting, I got a message that he wanted to meet, so we started off with me pretty confused.  He then went on to describe Matthew's needs and disabilities to me.

"Matthew is a perfect storm.  He is a child with Mental health issues, likely bipolar, significant congitive delays, and Fetal Alcohol syndrome and possible ADHD.  The mental health issues cause mood instability.  The cognitive delays also cause mood instability- he sees something he wants it, he has to have it. (if you have read the "I am a toddler" poem, you will understand Matthew.  If it's mine, it's mine, if it's yours it's mine, if I want it it's mine).  Additionally, the FAS does not allow him to process and learn as other's do.  His ADHD is also there, and also keeps him from learning from his environment"

He continued to say, " Matthew is successful here because of the high level of support we have."  (I was curious about the word "successful"  as just yesterday he was out of control and required thorazine to calm down, but apparently my definition of success is different from theirs.)

When I asked what the continued plan was for Matthew at 4 winds, he said that he was not making any more changes to Matthew's medication.  He has taken away Matthew's prozac, a medicine that was supposed to help with his anxiety and obsessions, and increased his Seraquel, which helps with his mood instability.  Matthew has nothing to help with anxiety at this point and anxiety is what is often the root cause of so many of his outbursts. 

He also has no medication to help with the fact that he is hyperresponsive to everything in his environment.  If  a clock is ticking, Matthew hears it.  If the wind blows, Matthew notices it.  If you walk in a room, he has to talk to you.  If you breathe, he has to listen to you.  Do you know how exhausting that is?  Can you imagine the effort it takes to pay attention to every single solitary thing that happens around you at all times.  Try it for a minute.........see how it feels.  Can you imagine doing it all day?


He continued that Matthew is doing well.  When I reminded him that just the day before he had needed Thorazine, he acknowledged that right now Matthew is not the most challenging patient they have and that he meant that Matthew is doing well by comparison to others.  He also acknowledged that since they know Matthew well, he is easier for them to treat and work with him.    I reminded him that my only focus is Matthew and that no matter how "well he is doing", I am concerned that he is not ready to come home.

Then the therapist dropped them bomb......they are sending Matthew home tomorrow.

I am not ready.  I tried to explain.  He has no school to go to.  I dont know how long it will take to transfer him to the new program, but my hope is Tuesday.
His brothers arent ready.  They are just returning to calm.  It has only been a week. 
I am not ready.  I miss my boy, but the knots in my shoulders are finally going away.  I am just starting to get life back to calm, and then I need to make some changes for when Matthew comes home and I havent had enough time to figure out what changes to make.

I asked for more time.  The therapist thought that maybe because of school he could buy another few days.  He asked, and the psychiatrist said no.  Matthew is coming home tomorrow.

I visited with Matthew, and we had a good visit.  We played UNO and I watched him watch the world around him watching everything.  He made a few jokes as we played and talked about breakfast, lunch and dinner.  He chatted with our friend who had come to the meeting to support me.  I told him I would see him tomorrow.

I cried most of the way home.  I miss him.  I want him home, but I cannot stand living in and out of trauma.  I had to tell the other 2 boys that Matthew was coming home.  I had to prep them.

When Jacob and I got home I made dinner and told Jacob and David that Matthew was coming home tomorrow.  I was calm and I told them that Matthew would be home tomorrow night.  Jacob's first response was, "I'm not ready", and his second comment was "what about the orange juice?  We have to finish the orange juice."

How honest and amazing that Jacob was able to tell me he was not ready.  I love him to death.  I love his honesty and his self assured nature.  I love that he feels safe enough to tell me what he thinks.

Jacob and David have been sleeping in Matthew's bed for the last 2 nights....i know they miss him, although Jacob will tell you it is because Matthew has a cool picture in his room.

I think one of my biggest problems is that I was just beginning to come to terms with Matthew's limits.  In my last post I put so many of my thoughts on paper.  My real sadness thoughts,.....of all the things I was grieving.  I love my oldest son.  It is a fierce, fierce love. 

My ability to come to terms with Matthew's struggles is a distance run, not a sprint.  I just feel like I was making headway and now I have to go back into the trenches.  I am not ready to talk about dinner before we eat breakfast.  I am not ready to be tense again. 

He will come home tomorrow.....I will go get him and we will get back into it.  He and I will find our way together. 

Jacob, David and I have each written the one rule we need Matthew to follow.  I am hoping that this gives the boys some control, and that for Matthew he understands that everything else is a little deal, but that these 3 rules are important.

1.  He cannot tease his brothers at bedtime.
2.  He cannot threaten to hit or kill Jacob
3.  He can't scare Jacob and David.

If I can promise them nothing else, I am hoping that I can promise Jacob and David this much.  If I can work on nothing else with Matthew, I am hoping he and I can work on this.

My family will be strong again.  We will be together and I will again be Matthew's strongest supporter. 

There is  a problem that the system discharges a child from the hospital a day after receiving thorazing due to an outburst.  There is a problem when a child is not really succeeding without a high level of support and the child is sent home to a single mom with 2 other children, and no new supports are added to help the family when the child is still unstable.

There is a problem when our insurance companies are deciding when a child has to leave the hospital rather than a doctor making this decision.  There is also a problem that there are so many kids waiting for beds that no sooner will Matthew be out the door than a new child will be in right behind him.

There are so many problems, and when I am not so knee deep in the middle of crisis, I will be a voice for change.  Until then, please keep sharing and talking about mental health.  There are children who's lives are at risk.  There are children who are suffering unnecessarily and families who are being stressed more than they can bear.  We need respite that works.  Support programs that are adequately staffed, and mental health care that truly ensures that children are safe before being placed back into their families who are ready and waiting with open arms.

5 comments:

  1. Amie, I have met you and the boys a few times at temple functions. These blogs break my heart and uplift me all at the same time. You are an amzing woman and I wish you and your family only peaceful times ahead. Your insight about mental health and children is so profound...I would like to share these blogs and spread the word...please let me know what I can do.

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  2. Lisa, please feel free to share the blogs any way and with anyone you can. Knowledge is power and I have to hope that our story can lead to change in the world.

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  3. Amie - I am new to your blog but so impressed with your courage and tenacity in fighting for what is best for your children. You are exactly who this country needs to hear from right now. Keep writing...
    May Saubier

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  4. Amie - I am just a mom sitting in Kansas wishing I could help you! I just shared your blog in hopes that the more eyes that see it, the better.

    I am inspired by your tenacity and love for your kiddos.

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