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!

Monday, January 28, 2013

looking for help, finding closed doors

After a really rough weekend, I decided last night that I had to contact Healy House today for Matthew.  Healy House is a 21 day respite program for children.  Basically Healy House offers families who care for children with mental health or behavioral issues 21 day break.  The goal is that you will be working to make improvements or changes over that 21 days so that the child can return to a better environment that is more able to help the child succeed.

This can mean that in the 21 days a therapist is being found for the child.  It can mean that the school program is changing, it can mean that the child is adjusting to new medications.  It can mean that the respite will allow the child to return home to new rules and structure.  The goal is that something is changing or being changed over the 21 day respite period to allow for better success once the child returns to the home.

This morning I  called Healy House to find out of there was a bed available for Matthew and I was told that I had to have our medicaid service coordinator do an intake phone call.  I then called our medicaid service coordinator and asked him to call me so that he could get the information from me to call Healy House.  I spoke to the medicaid service and filled him in on the incidents that have been taking place and he then called Healy House.

The staff at Healy House intake were concerned that Matthew would do better with a hospital placement rather than a respite placement, and again we begin the mental health circle.  The hospital feels like there is nothing else they can do, that is why they discharged Matthew a week ago.  Matthew is home and is not succeeding, so I need somewhere for him to go that is safe for him and will help him.  Healy House is good option, but they are not sure that he is a good candidate for their program.  I cannot imagine that the hospital would think it makes sense for him to return there, as they thought that they had done as much as they could with medication.

So now where do we go?
He can't go to the hospital...they do medication adjustments and feel like there is nothing to adjust
He can't stay home, it isn't safe for him and his brothers are struggling with Matthew's outbursts to feel safe.
Healy House is not sure he can go there as they feel he needs a more restrictive, hospital setting.

So where do we go?  What do we do?  Today, to do all of this took me over 4 hours.  How many days do we do this for?  Especially, because at the end of these 4 hours, there are no solutions. There is no plan.  I know no more tonight than I knew this morning.

The only good thing that we have in our favor is that I have a therapist who we are working with now who is in our corner. We have a great medicaid service coordinator who feels my frustration at the system and is very dedicated to helping my boys. 

I am a driven, educated person who is determined to do the best I can for all 3 of my children.  While I am often filled with doubt, I am also determined that I have to look out for the physical, emotional and educational needs of my 3 boys.  I am passionate about my ability to care for my boys and the only thing that is truly important to me is knowing that I can wake up each morning knowing that no matter what happens I am doing the best I can.

What if I didn't have the support I have?  What if I didn't know how to access the system to help my children?  What if I wasn't so driven?  What if..........

Remember, I have fought to access the mental health hospital and we have left there with no support.
I have accessed the police, and they have had no answers.  I have accessed programs for children with special needs, and they have reached the limit of how they can help.  I have accessed community programs, and they have no leads.

Seriously, if you are a family in crisis, there has to be plan.........It should read:
If you are a family in crisis, you should call 111-1111, you will be connected to an operator.  If your child is in need of immediate help, you will be put in immediate touch with agency X.  Agency X will be your support agency.  They will ensure that you find appropriate medical care, psychiatric care and respite care for your child.  Agency X will work with you and respond quickly in an emergency situation.  Agency X will always have an emergency respite option, in response to an emergency situation.

 Agency X will first work to ensure that everyone is physically safe. After ensuring physical safety, they will ensure everyone's emotional safety and finally they will ensure the health and safety of the family as a unit.

You will be discharged from Agency X if and only if your child is emotionally healthy for a period of at least one year.  Staff from Agency X are responsible for ensuring a full system of care for each member of the family who is dealing with a child in crisis.

Just knowing that I could deal with one agency in crisis would help.  Knowing that there is one number to call.  One group of people who would know our story.  One group of people who would respond.  One place to call for help.  That would be a solution!  That would be a success!  That would be a way to help a family in crisis when a child has mental health issues.

2 comments:

  1. Sounds like a plan!...a plan you are going to have to try and create on a state level and then hopefully it can go grass roots and take hold at a national level , as state and fed have separate regs when it comes down to mental health etc level needs.
    It sound also like the every day S.O.aka special needs that often fall through the cracks,the scenario those of us living " outside the box" MUST confront and deal with.
    Here's to another day...

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  2. Consult with your therapist and psychiatrist to find treatment for your son. After a stay in the hospital, there are usually post-hospitalization programs. Good luck and hang in there.

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