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, November 23, 2011

you can learn alot from a 5 year old

Throughout the time that Matthew has been  in the hospital, it has become apparent to me that as Jacob has gotten older, he has some real feelings about being Matthew's brother and all that has gone on with Matthew.

 I am thankful that Jacob has wonderful teachers, an amazing speech therapist, and other adults in his life who are able to help me monitor how Jacob is doing.  These adults have been safe for Jacob, and he often will seek them out to share his thoughts and feelings. 

Jacob  has made it clear that he feels safe when Matthew is in the hospital, and that he is worried when Matthew comes home.  Jacob and I have been doing a lot of talking about this recently, and I have realized that it is important that I create a plan for when Matthew comes that keeps Jacob feeling safe.

Matthew's therapist at 4 Winds and I decided that it would be good to have Jacob and David come in to meet with her and Matthew  while Matthew is still in the hospital.  Because Jacob is so verbal, we decided to bring Jacob in to meet with Linda, the social worker, today and that we would bring David in next week.

I was amazed at how much Jacob shared.  His thoughts are very clear, and he is very aware of how he feels.  When Matthew gets angry, Jacob is scared.  When a friend comes and takes him to their house, he feels better.  Jacob needs to know that I will call someone if Matthew is angry, so that he can go to a friends house and feel safe.  Also, Jacob was able to tell Matthew that he goes to my room when Matthew is mad, and he needs Matthew to stay out of there when Matthew is angry.  This is Jacob and David's safe spot, and it is scary for him when Matthew comes in there.

Jacob was amazing at talking to Matthew.  He told him how he feels, he shared that he misses him when Matthew is in the hospital, but that he likes that it is quiet at home, and not scary.  I was so proud of Jacob and how he was able to take care of himself and verbalize his thoughts today.  As the meeting was wrapping up, I was talking to Linda about having David come in to do a similar meeting.  I asked Jacob if he thought that was a good idea, to which he said, "yes, David should come, I will come with him, he will like that".  My heart melted.  Jacob may be the youngest in my family, but he is aware that his brothers have some limits.  He seems to be aware that in many ways Jacob takes care of David and speaks for both his thoughts, but also David's thoughts.  Linda and I told Jacob that we will definitely have David come and meet with Matthew, and then asked him to tell David that meeting with Matthew is ok at the hospital, and that Matthew listened.

Well, we got home a few hours later and got David off the bus.  David and Jacob immediately started playing, and as I walked by, I heard Jacob tell David, "you will meet with a lady at 4 winds.  It is good.  You will talk to Matthew.  He will listen"

I could not believe how much Jacob had taken away from our meeting today, and how he shared it all with David.  While David did not answer Jacob, I could tell that David was thinking about what Jacob said, and that David heard Jacob.

I am thankful that we have this next week to keep talking about what we will do when Matthew comes home.  My first priority will be ensuring that Jacob and David know that I am aware that they need to feel safe.  Even if Matthew is just yelling, he is loud and it can be scary.  Matthew is so limited cognitively that he struggles to see that his actions have an impact on those around him.  I truly believe that if Matthew had any control he would never want to scare his brothers or make them afraid, but sadly, Matthew's brain damage does not allow him to have the ability to stop himself when he is angry, so it is up to me to ensure that I do all I can to create time for Jacob and David to have calm and quiet even after Matthew comes home.  I am in the process of enrolling Matthew in a respite program where he can go for a weekend, so that David and Jacob and I have a weekend each month to just be the 3 of us.  To enjoy the quiet and predictabliity that is not always possible when Matthew is home.

Life is in many ways a balancing act when you are dealing with a child with mental health and developmental issues, and when you have more than one child to care for.  I am thankful that Jacob is sharing his needs with me, so that I can ensure that each of my boys is getting what they need from me, and from the world around us.  I am proud to be Jacob's mom.  I know that I am raising a strong, little boy who will have a major impact on the world because of all that he learns from being david and Matthew's brother.  I am impressed by Jacob's ability at the age of 5 to clearly state what he needs and to be able to talk to Matthew and tell him what he is afraid of.  I am also proud of Jacob's ability to offer love and support to David as they travel this path together.

Today I am proud of my boys, all 3 of them! and I am beyond thankful for all of the lessons I have learned by simply being their mom.

Monday, November 14, 2011

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.