update on Matthew

On Thursday I had a meeting at 4 Winds with Matthew's therapist and the Senior Psychiatrist,Dr Alessi,at the hospital.  I  was expecting to have our weekly meeting with the therapist to find out how Matthew was doing, and to learn more about the direction and plans for Matthew while he was in the hospital.    After I signed into the hospital I saw Dr Alessi and said hello.  Then as I drove to Matthew's unit, I realized I was following Dr Alessi's car.  When we both got out and walked towards the door, I was suprised when Dr Alessi said that he was coming in to meet with me and the therapist.

The therapist started our meeting by saying that she needed me to make sure I was taking care of myself.  That it was important for both me and the boys that I begin to take time to allow myself to cope with the reality of being Matthew's mom.  She was clear that Matthew is a child with lots of positives- cute, entertaining, loving, endearing, but also a lot of struggles- he is cognitively much more limited than he appears when you just chat with him.  He also has no ability to delay gratification.  His brain is damaged, and part of what is damaged  is his ability to cope when things do not go as matthew wants.  His inability to cope leads to huge explosions, explosions that are tremendously out of proportion to what has occurred and this is what creates the dangerous situation for Matthew and the rest of us in his family.

The therapist is concerned that I have not allowed myself time to cope with these realities.  She says that I present as a very strong woman with a lot on my plate, and she is concerned that with 2 children with considerable needs, and a 5 year old, I need to make sure that I have someone to talk to, especially as things with Matthew continue to progress.

The psychiatrist then laid out for me the reminder that children with FAS have damaged brains.  This damage makes it very challenging to treat them with medication.  For example, if you have  a broken arm, and you take advil, the advil does not fix the break, it just fixes the pain while you wait for the bone to heal.  We are looking for a medication that allows Matthew to remain a little calmer so that when life upsets him, he does not get SO upset.  Sadly, his brain does not process medication the way that typically developing people do, and the damage is so severe that finding a medication that will truly work is unlikely.

He is currently adjusting the medication that matthew is on by increasing the dosage.  I would like to say that we are seeing some amazing changes, but sadly this week has been a harder week for Matthew.  He is struggling and seems to be on edge.  He is struggling with the other kids at the hospital and taunting and teasing them.

It seems like for Matthew it is mostly a cycle of phases.  I am not certain that any of the medications Matthew has taken really have an impact on him.  The cycles are just intense for him- a few good days, which means less tantrumming, and slightly less intensity in his relationships, but he is still edgey.   Then the really bad days- intense tantrumming, almost no ability to be with peers without instigating trouble and being aggressive.   And then the in between days.  On these days you can enjoy your time with Matthew in short bursts.  There are times of happiness where he is fun to be with, but then other times of the day where he is a little edgier. 

I am working to accept the reality that when matthew comes home from 4 Winds, he will likely come home the same as when he entered the hospital.  I will need to have plans in place to support us when he is struggling.  I will need to make sure that on nights that Matthew is edgy that I have a structured routine that he can rely on so that we have the best chance to get through the night successfully.

Realistically, I can say that i have accepted this as our reality.  I can say that I know that Matthew will struggle when he gets home.  However, I don't know how to really accept that after these 5 weeks have gone by, and David and Jacob and I have enjoyed 5 weeks of calmness, that when Matthew comes home we are all just supposed to accept the new reality and go back to walking on egg shells.  David and Jacob have been very clear that they are more comfortable at home without matthew.  While they know that we have good friends who wil lhelp us if Matthew is struggling, and they have seen that I react to those struggles by calling for help, no one wants to live in  a home that is stressful.  No one would choose for Matthew to struggle or for any of us to struggle.

I am beginning the process of looking for residential programming for Matthew.  This will be one of the hardest things I do as a mom.  But, for all of us it will be the best thing, I truly believe that.  Matthew does best when he is with lots of different people who are fresh and can relate to him and be with him without feeling stress.  This is why in the hospital, with all of the staff, they each can take breaks when being with matthew becomes exhausting. 

For David and Jacob they will get to visit Matthew play with him, and be with him sharing positive times, but if Matthew is edgey or struggling, they will be allowed still to go on with daily life without the intensity of Matthew.

Going through this process will be  a challenge.  I will have ups and downs that I cannot even imagine, however, I believe that for all of us this will make sense, and it will happen in the right space and time.  I look forward to Matthew coming home from 4 Winds, and to being united as a family when he is as healthy as possible and ready to be with us.  I know that we will have good times snuggling as a family.  We will read together, play together and snuggle together and those moments will be wonderful, as we build memories together.  And I am going to begin the process of recognizing that my family may not always live together under the same roof, but we will always be a family of 4 no matter what.