Saturday, May 11, 2013

CSE meetings, an article in the paper and an update

This is a first for me......I have completed all 3 of the  CSE meetings for the boys, their IEP's are approved, and I did it all with no tears!  I am not sure that it ever really gets easier to know that your child, or in my case children, need educational support.  I know it never gets easier to see their test scores in black and white. 

This year the hardest score for me to see was David's score of 0.3 in mathematical operations (ie plus, minus etc...).  This means that David scored better than only 0.3 percent of all 9 year olds.  This is a hard pill to swallow, but it was made easier by his amazing team of teachers, therapists and other staff members.  They helped to remind me that David is not defined by this one number.  They reminded me that he is showing growth.  We laughed as we looked back at David's 3 years with this team.  We chuckled as they shared stories of him using his loud voice to ask for stuffed animals while inside a tunnel.  We celebrated that he counts to 50 now.  We celebrated that he can at times dribble a basketball.  We celebrated all of the fabulous that is David, and they wrote a document that shares the supports that he needs to be successful. 

Matthew's meeting was with his new teacher and his new school staff members.  It was also a meeting to celebrate.  Just months ago I was not sure that Matthew could continue living at home and I was spending my nights researching how to place your child in a residential placement setting for children with developmental disabilities and mental health issues.  Matthew still struggles with these issues, and I am aware that we are riding a roller coaster and on every good roller coaster there will be ups and downs.  However, he is in a very small class, often only 3 children, a teacher ,  3 aides and therapists coming in and out to work with children.  Often there are more adults than there are children, but this is the environment that keeps him calm and happy enough so that at home he can cope.  This is the environment where he has success.  This is the environment that allows me to be supported as Matthew's mom.

The teacher helps  me understand the amount  of support that  Matthew needs so that I can best support him at home.  We have a consistent behavior plan between school and home that helps tremendously.  That said, I also believe that Matthew is a child who just has normal ups and downs, and when he is up, life is good, and while it is not perfect, he is a child who is manageable.  Then there are times when Matthew is down, and we are struggling over everything and it is a constant challenge to keep him calm and to keep everyone else safe.  Right now, we are on the cusp of a downward spiral.  My hope is to avoid it, but even with maximum behavioral support we are walking  tight rope.

For Jacob, his team helped me to understand that he is growing and gaining skills, but it is at a slower pace than average and he again requires support, but he is moving forward gaining kindergarten skills.

Each year it is hard to not just have your child go on to the next grade in a typical fashion, but if we have to go through the special education department, I know that we are in the best district to get the needs of my boys met.  The care and dedication from the teachers and the special education staff is amazing.

Today my family was featured in an article in the local newspaper.  The article does a wonderful job telling my family's story.  It takes you through the adoption process, and introduces the boys and their struggles, and talks about our successes and the fact that to me my boys are incredible gifts.

I truly believe that adopted children find the home that they belong in.  For some children it is a long, winding path to find their forever family, but each child finds their family in their own time.  My children found me.  We were meant to be together.  I am just enough of a pig headed person that I will fight to the death for my boys, however, I also recognize that there are limits to all systems.  I will always ensure that my boys are loved and cared for by those with them.  I will always make my boys be their best- their diagnosis do not allow them to get away with poor behavior.  Their diagnosis do not define them, their diagnosis challenge them, and offer my family struggles, but it is in how we deal with these struggles that we find success!

My goal when I first was asked to do this article was to bring attention to the fact that there is not enough support for families in crisis.  I was sad when the article took a turn, and instead the focus became more about me as a mom raising my boys.  I believe that any information about my family will show people that there are families who are struggling and that there is more that needs to be done, however, I think it is important to remind people that we have waited in crisis for over 3 weeks for a bed for Matthew in a Psychiatric hospital.  We have waited because the beds were full of other children in crisis.  We have waited while he tantrummed daily.  We have waited, me unsure that we were safe and Jacob emotionally in crisis from fear.  We have waited as I watched Matthew plummet into the darkness of mental illness.  We have waited because the system is broken. 

As you share the story of my family, please remember that the most important  reason I share is because I hope to make a change.  As I have blogged, many families have reached out asking for anonymity but telling their story that is so much like mine.  A child with mental illness, a family with no where to turn.  A family though afraid of being judged if they share their story.  We would never judge a child with diabetes, or a parent of a child with cancer.  We need to offer parents of children wth mental illness the gift of not being judged.  We need to offer them the gift of love and support.  Mental illness is invisible but it brings great pain and sadness to families that it touches.  It can often no be cured, but certainly hiding or denying that it exists does not in anway way make it easier to get help for other children and families.

Together, we can get help and make a change for children and families who are struggling. Together, we can get rid of the stigma of mental illness.  Together we can help children be emotionally safe!

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