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!

Tuesday, December 27, 2011

It's all a matter of perspective

A week ago Matthew was able to secure a spot at Healy House, which is a 3 week respite program run through Parson's.  I had tried to get him into this program in the past when we were in crisis, but there were no openings.  Thankfully, as things bottomed out last weekend, an opening became available at healy house.

When I first brought Matthew, it was all I could do to not go back and pick him back up again.  While the setting is more home like than a hospital, I did not get the best feeling from the staff initially, and I was panicked.  At healy house Matthew goes to his own school, and he continues to go to the YMCA afterschool program.  As I tried to tell the staff matthew's schedule, it kept getting confused, and I was panicked that if they couldn't keep his schedule straight how in the world would they keep the important stuff like his medicines straight?

Luckily, when I had some time to talk to some friends, I gained some perspective and decided to leave Matthew at Healy house.  This has been a transition for me, and I am sure for him.  The rules are very different than in the hospital.  Parents are encouraged to visit, take their child home and even take their child overnight while they are staying at Healy House.  Parents have a much bigger say in what their child is doing at Healy House and it is more of a partnership than the hospital where the doctors and therapist guide decision making.

I have taken matthew home a few times, but it is stressful to decide how often to go see him, or take him home.   I am struggling with the pressure about how often he should be with us, and how to best use this time as a break for me and the boys to rejuvenate for when Matthew comes home.

The biggest struggle I am still dealing with is the fact that when I call to check on Matthew I hear "he is great", "he is doing well" or "no problems".  I always internalize this to mean, "we can take care of him, so what the hell is wrong with you?"  Luckily, in the midst of an emotional breakdown today, I called Healy house and after hearing one more time how "great" matthew was doing, I asked the Head of Healy House, a wonderful, caring young man, if the boys and I could come visit Matthew at Healy house and if he would then give me feedback as to how to improve my relationship with Matthew.

While I didn't learn too much more about Matthew- he was distracted, edgy, and struggled with relationships, but also funny and cute and endearing,  I did get an earful about how Matthew is really doing and I got to participate in the House Meeting.

The House has a meeting at least 3 times each day where the kids and staff check in and everyone is asked how they are feeling and then they are asked what their goal is for the day, and who can help them reach their goal.  I love that the kids ask the staff how they are feeling and what their goal is- what a great way for staff to model emotions for the children.  I also like that the kids have to say who can help them succeed with their goal because so often we can't reach our goals alone.

What I saw during the house meeting, was the other kids were very aware of the routine, and waited their turns, and Matthew continuously was trying to take over the meeting and guide who was to talk.  I also noticed Matthew's inability to concentrate on what was being said, in relation to the other kids who all stayed sitting and listened to each other.   Matthew wiggled and fidgeted, spoke out of turn, and was intrusive- all of these things we struggle with all day, every day, and exhaust me, leaving me less reserves for when we are dealing with the bigger issues.  matthew did respond to multiple redirections from the staff, which is why they say he is "doing great" but then again, there were three of them who each had to redirect him only once or twice, rather than me who would have dealt with it all alone.

The best time of our visit though was when I met with Tim, the house manager of Healy House.   Apparently he had tried to call me twice this weekend to talk to me about incidents with Matthew- both were of major concern to me, but because they are just getting to know Matthew, they were concerned but not panicked.  Tim was concerned with some of Matthew's interactions with the female staff, and he also described an incident where Matthew threw his bowl when he couldnt have more food, but that as Tim walked into the room, Matthew stopped tantrumming over the food.  Tim attributes this to the fact that Matthew likes Tim, I agree it is likely because he really likes him, but also because he is a man, and a new face into the situation when matthew was mad which is likely to diffuse the situation.

There were also some incidents of cursing, and name calling and struggles during Kickball games which led to Matthew sitting out.  Essentially, Matthew is showing many more of the behavior struggles at Healy House than I would have expected.  Typically in the hospital setting there is a honeymoon period, Matthew has not had a honeymoon period at Healy House.  So essentially, them telling me that Matthew is "doing great" is another way of saying Matthew is being matthew.  He has not hurt anyone, which is great, but he is struggling consistenly throughout the day.

I never want Matthew to struggle, however, I also have to know that there is no magic key to making Matthew better.  If there is one, I am willing to move heaven and earth to find the key and use it.  So, when I call and ask "how is Matthew" to hear that he is great, when he is cursing, and angry and bothering the other kids, is not truly accurate, and simply is leading to me beating myself up, for no reason.

The definition of insanity is doing the same thing over and over again, when it didn't work the first time.  I struggle and have struggled with others being able to work with matthew better than me, since he was tiny.  I always think I have done something wrong.  That if only I did X it would all be better.  There is a rational side of me that knows this isnt't the truth.  Sure, we can all be better parents sometimes, but for the most part, I am doing the best I can by Matthew.

If others who work with him would describe "what actually is happening" rather than just telling me things are great, it would go a long way to me building back my self esteem as a parent, and then having honest conversations about how to problem solve with Matthew when they are dealing with an issue I deal with.

I am thankful that Tim was able to have this conversation with me today, and I am thankful that Matthew will have the experience of working with Tim over the next 2 weeks.  Tim has a gentle, kind manner, that Matthew seems to really listen and respond to.  Tim seems to have a gift for working with children in need, and maybe, just maybe, as Tim talks to matthew, Matthew will listen and will hear things and make some progress.

Monday, December 12, 2011

plugging away and hitting brick walls at every turn

I think the thing I am struggling with currently more than anything is the time it takes to try to do the best possible for Matthew. See, everyone seems to agree, what matthew needs to be as successful as possible is residential programming.  Unfortunately, the avenue to residential programming seems to be non existent.  It isn't like you find out what to do and then step by step go through the process of finding the right program.  Instead, everywhere I turn there is  a dead end.  Quality programs have been closed due to budget cuts.  I have spoken to the hospital, they don't seem to have a list of program options. i have spoken to the service coordinator, he does not have a list of program options.

Our family therapist called the intake worker at Parson's,  a local program that helps children and families,  she said that most of the programs have closed for children with developmental disabilities.  It is simply not possible to afford to keep these programs open, there is no money.

Today I had appointments to apply for Social Security Benefits for Matthew and David.  Apparently, for children with life long disabilities, there is a program that will give the kids SSI benefits.  My hope was that if Matthew qualified for SSI that I could then afford to purchase more respite hours for Matthew which would provide more support for Matthew while he is at home.  Sadly, none of the 5 people who told me I HAD to apply for this told me that my income would disqualify the boys for coverage.  Even when I spent over an hour on the phone with the people from SSI to find out if the boys could qualify for I was told they may qualify.

Imagine my frustration when I took the day out of work to spend the day at Social Security, and no sooner did I walk in, then I was told that my boys didn't qualify based on my income.  Now please know, I am the director of a not for profit child care program.  My income is far from fabulous!  However, if it is an easy formula that tells SSI whether a child qualifies or not, isn't it possible that this formula could have been run through BEFORE I took the day out of work, and spent 10 hours organizing all of the boys files and filling out a million forms.  I had to tell SSI all of the doctors the boys have ever seen, gather the names of all of their educators, therapists, dates of all doctors visits, gather contact info for anyone who has ever worked with them, and it was all for naught!  Talk about frustration.

In addition to all of this, our morning once again started with Matthew having a tantrum.  He has only been home 7 days, and yet this morning he again refused to get on the bus.  I called a friend to come and get Jacob, and then I spent an hour at home with matthew helping him get calm enough to go to school.  Finally, he got in the car and we drove to school.  No sooner did we get in the parking lot, and he again exploded.  He refused to get out of the car, he refused to go into school, he then refused to go into the classroom.  The principal was out of ideas.  She had no idea how to help get him ready for school, so I suggested that I had just heard of a new school counselor who was working with the Mobile Crisi Unit.  She put a call into the Mobile Crisis unit, again, the focus on CRISIS- as in person having a MAJOR problem.  PERSON IN NEED OF IMMEDIATE HELP.  and guess what, she was told that there was no one at the Mobile Crisis Unit who could help us, they were busy!

 I then suggested that since Matthew still wouldn't go into school, that maybe she should call for the safety officer of the district to see if he could help us get Matthew into school.  By the time the safety officer got to school, Matthew had finally settled and was ready to go to his classroom.  Because he had been dangerous when the bus came this morning, the prinicipal wanted the safety officer to remind Matthew of bus safety, which the safety officer did and then Matthew went on to school.  I then asked the safety officer what else I should be doing- as  it is a state law that kids have to go to school.  This year, while Matthew has been at home, every single week there has been a day when he would not go to school and it has taken me over an hour to get him to school and into the school day each time.  No working parent has time for this.  It is Matthew's disabilities that create this problem.  We have to come up with some sort of protocol as to what will happen if Matthew will not get on the bus to go to school.

I am not sure what the next step is, I have no choice but to keep plugging away to see what I can do to find sucess for everyone. I am thankful that there was no violence ths morning, just tantrumming and anger on Matthew's part.  That is a positive which I am thankful for, however I need us to find a path without dead ends.  There have to be answers, because one can only bang their head against a brick wall for just SO long before the wall falls down.