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!

Wednesday, January 23, 2013

i've made a few decisions

Anyone who knows me well knows that I have always like to read non fiction stories.  As the mom of 3 children with special needs, reading non fiction has always been a good way for me to read stories of people who are living through life's challenges and surviving them.

There is the mom with 3 children on the autistic spectrum.  She is living and thriving.

The mom with 3 children who are blind,  deaf and nonverbal, they are all thriving, and she even found an amazing man to marry her and take on being the father to these 3 girls.

Each of these stories has provided me comfort on hard days.  They have given me a reason to keep going and reminded me that life is full of challenges for all of us.

I have made the decision to be open about our story.  My goal is that this blog is not just a blog for my friends and family, but that maybe it can also be a blog that tells the story of a family who struggle and overcome challenges.  Maybe it can be a blog that helps other families.  Maybe this blog can be the blog that helps those in power realize that our system doesn't work.

We live in a suburb near Albany, NY.  It is a middle to upper middle class area, with a fabulous school district.  Just yesterday, while the police were at the house helping Matthew, I asked how often they get calls like this to help with a child who is out of control.  I was feeling like we had to be a rarity in our area, and I was a touch embarrassed.  To my surprise, the police said they deal with calls like this daily, even multiple times a day.  This is shocking!

What is even more shocking is that in dealing with this multiple times a day, they still have no suggestions.

What we need are more temporary beds for children in crisis.  Beds that are actually available in an emergency.  We need beds in places where doctors can be available to provide medication adjustment.  We need beds where children can stay until children and families are truly stabilized.  We need doctors, along with families,  to be the ones who determine that a child is stable.

We need more respite providers.  Providers who work during the times that families are in need.  Providers who are trained to work with challenging children.  Providers who will commit to these children for a length of time that allows them to build relationships and also feel comfortable that their intense behaviors will not cause the provider to leave.

We need people in our education system who understand the limits to the mental health system.  Who understand that families in crisis need help.  We need those in our education system to have access to information to share with families that is accurate and helpful.

We need psychiatrists who have time to meet with patients and who understand the challenges of children with mental health issues.  We need these psychiatrists to have more than 10 minutes to spend with a family at each visit.  We need these psychiatrists to be a partner with parents in care for the child.  We need them to understand that a mental health illness for a child has a huge impact on all aspects of the family.

The most frustrating thing to a family in crisis is for people to suggest they do X or Y and Z and they waste time doing X, Y and Z only to learn that there is no help available.   We need there to be the same easy access for mental health care as there is for any other illness. 

If your child has epilepsy, you see a neurologist.  If your child has cancer you see an oncologist.  If your child has arthritis, you see a rhuematologist.  While you may have to look for the right "ist" doctor who meets the needs of your family, at least you know that you can find a doctor and the doctor can provide the full course of treatment your child needs.

I am going to ask that anyone who reads this blog forwards it to someone else.   Matthew is an amazingly loving child.  He charms everyone who meets him.  He is not some monster.  He is a child in need, who deserves to have help.  He deserves to have a mom who can find him help and not constantly bang into brick walls.

Autism became a better studied and more well known disorder when people finally stood up and said it was "ENOUGH".  Finally money was ear marked for autism, therapies were tested and now there are many main stream opportunities for children with autism to participate in.  Most school districts have classes that are created for children with autism, that help the children mainstream and work on social skills.

Parkinson's disease became more well known when Michael J Fox was sadly diagnosed with Parkinson's disease.  It takes money to study a medical disorder.  It takes a spokesperson, it takes a voice, to raise awareness.

Unfortunately, most families who are dealing with mental health issues of a child are overwhelmed. They are constantly walking on egg shells.  They are anxious about what will cause the next explosion.  They are balancing life, working hard to ensure that when the child with mental health issues is calm, the other children in the family get some time and attention.

I am lucky.  I have a fabulous family, and an amazing network of friends.  I have found an outlet for my guilt and anxieties in this blog and now I have discovered that people are reading and listening.  What we have to do now is get more people to read and listen. Forward this blog address to someone now who can help us take action.  Maybe you know a psychiatrist.  Maybe you know a mental health worker.  Maybe you know a politician.  We all know somone! Please help not only for Matthew but for all of the other Matthew's out there who do not yet have a voice.

I have made the decision to go public with our story. To go public with our challenges and to put ourselves out for the world to see.  I want to make sure that Matthew gets help now while he still can be helped. I want him to get help before he becomes known for something horrific!  We need to put the resources into helping families now before it is too late and we are just managing the behavior of these children while their lives are wasted in jail.  Jails and prisons are currently filled with men and women with mental health issues and Fetal Alcohol Syndrome among other disorders.  Maybe together we can keep the next generation of people out of jail and prison, if we work together.

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