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, December 18, 2013

cutting edge of a diagnosis

David is diagnosed with a somewhat rare genetic condition- he has a duplication of a small part of his 15th chromosome.  Since we found out about this duplication about 4 years ago, this duplication has been recognized more and more and now there are actually 4 clinics across the country that are studying this condition.

I keep hoping that the more this disorder is studied, the more likely it will be that there will be answers, and the magic pill will be found.  I am not expecting the magic pill that makes David better, I am pretty convinced that David will be David and I am totally ok with that.  Part of what makes David really special to me is his innocence.  He is still really happy at the age of almost 10 sleeping with his 2 giant Mickey Mouse stuffed toys.  He loves cook books and doing puzzles, and is just generally a pretty happy kid.  He doesn't need a lot in life to make him happy- he is happy to be with other people, but is also equally happy to spend hours building and playing with legos by himself.

By magic pill, however I m hoping for the explanation as to what makes David tick, and when he struggles what is making him struggle.  When David was first diagnosed with seizures at the age of 4 he started taking a medication called Topomax.  For David, this was medication that created a huge change in his entire being.  His language blossomed, his behavior calmed dramatically, and he was much more aware of all of us.  This was the first time that I felt like David was really connected to me. 

Since then, he has tried other medications but the only one that I have seen have a true impact on him has always been the Topomax.  In late September, David was taken off of the Topomax because he had a kidney stone and this is a known side effect of Topomax.  In October there was a drastic change in David's behavior in school, he went from being a calm, well behaved student in his classroom, to really needing a high level of support each day until around 11:30. 

In November, David went back on the Topomax for a trial period, and there was again a change in David.  The calm David returned, and while he wasn't back to his baseline behavior of September, he was doing better and better each day.  Once again, in the beginning of December he came off of the Topomax, and once again his behavior plummetted.  He again was in need of a high level of support each morning in the classroom.

For the past week I was trying to get in touch with the specialist at the 15Q duplication clinic to get him to help me figure out what was going on with David.  Was he having seizures in the mornings?  Was the Topomax doing something else for David?  Was he having headaches?  He often would point to a part of his head when asked if something hurt or was uncomfortable.  It is so frustrating to know your child is struggling, but not know what is wrong and not know how to help him.

The only thing that I know for certain with David is that he is a child who will ALWAYS do as well as he can when he can.

The feedback that I received from the specialist was that children who are autistic often do well on Topomax because it is a mood stabilizer.  As I read this feedback my heart sank.  For so many years David has been diagnosed as autistic, but he is not at all autistic.  He has symptoms that are similar to a person with autism- he struggles with communication, his eye contact comes and goes, he struggles with social relationships and he has some repetitive behaviors.  However, all that said, David is very connected to me and many other people in our family, essentially once you are in David's world the relationship he has with you is very close.  He is able to communicate, but often chooses to use few words, however at other times he is super chatty and giggly. Essentially, to define him as a person with autism just simply does not explain who David is and does not describe all of David's struggles completely.

In many ways I feel like I have been fighting against an autism diagnosis for David for years, so to read this information from the specialist, who is supposed to totally know about David's genetic condition, was disconcerting.  Thankfully today we had an appointment with David's local neurologist and I was able to really ask him questions and get some great feedback.

Our local neurologist knows David- this was even more clear today as he teased David.  David is ALWAYS chatty as we enter the waiting room in the doctor's office and is almost always silent inside the office.  I didnt realize that the doctor knew this, however today he teased David and wanted to know why he won't talk to him.  The doctor referred to the "morning David" and the "afternoon David".  The "morning David" has a twinkle and a liveliness in his eyes and when he talks there is an enthusiasm and speed to his speech that the "afternoon David" doesn't have.  I loved that our doctor knew these things.

The doctor explained to me that almost anyone these days with a developmental disability could be classified in the category of autism somewhere, but that he agreed that David is not autistic.  By virtue of him having a genetic disorder, David cannot be diagnosed with autism.  

The doctor also explained that we are in a circle of the chicken and the egg.......When David came off of the Topomax, did David's behavior change because he stopped sleeping as well? Did he start having headaches?  Did he feel more confused because the Topomax was giving him clarity or calmness?

The big answer for now is "we don't know."  David and I are at the beginning of the age of the 15 Q duplication.  This is a newly recognized condition, that means we don't have centuries of data which shows what medications work best and why they work best.  We don't know what happens when these children go through puberty.  We don't know a lot about this disorder.

We have a better chance now more than ever to find out from a larger group of people how this condition affects people.  With the internet and the world being more interconnected, families can share with each other how the condition is affecting their child.  What medications are helping their children, and what makes their children struggle.

For now, we are lucky to have a local doctor in our corner who knows David and is willing to try a variety of things to make David be the best David he can be.  He is willing to listen to me and David's teachers and to hear our thoughts about what is going on with David, and to use these thoughts as working theories.  He is willing to hear me, as David's mom, as the person who knows David intimately.  For me, that is the most important thing.  I need a teammate, who has the medical knowledge to help us, but who also has  a desire to help David be the best David.  I need a doctor who knows David intimately, and a doctor who knows and cares about my morning David as well as my afternoon David!

Sunday, December 15, 2013

The difference of a year

As we are heading into the end of 2013, I find myself doing a lot of reflecting about the end of 2012.  It is interesting to me that the struggles of life change so much from year to year, and our ability to cope changes so much too.

Last year at this time, Matthew was stealing candy, struggling in school, at the lowest point he has been with food obsessions, and I was looking to get him into respite and the psychiatric hospital.  We hit our lowest point ever on New Year's Eve.

Matthew was last at Healy House in February, I have not even called for a placement since then.

Obviously, given where we were last year at this time, we are really flying high this year.  That said, each of us adjusts to our norm, and that is where we live on a daily basis.  I know myself, I am just feeling tired like I wrote in my last post.

What I am never completely certain about is where the other two boys stand.  Tonight I got another reminder, that I have to keep life in check and be aware that while I am feeling like we are all ok, because we are better than we had been, the boys do not judge our life against the past, they judge it against the life they hope for, the lives their friends live.  The lives that include play dates that are stress free, and big brothers who make life fun, not so challenging and unpredictable.

I live knowing what our worst was,and anything better than that I can live with and feel pretty good about.  I remember there were times that we have had the police here multiple times in a week.  There were times the little boys needed to be picked up and removed by friends multiple times in a week.  We are doing ok, by the comparison to all of that.

Jacob and David and I spent the evening watching Karate Kid.  We snuggled under a blanket and just loved being together.   Matthew watched tv in a different room, and was pretty happy.  After the movie was over, I sent the boys upstairs to get jammies on and I thought we would read books before bed.  What should have been the end to a great day!

A few minutes later Jacob came downstairs and was obviously upset.  I hadn't heard any screaming and had no hint that anything was wrong.  When Jacob wouldnt tell me what was wrong, I called Matthew in to find out what had happened.  After going on and on about how Jacob was mad, and how Jacob told him he was going to hit him, I finally got the whole story from Matthew, that Matthew had teased Jacob and mimicked how Jacob talks.

Jacob is a little guy who is very, very aware of his speech struggles.  He knows he is not well understood, he knows that he has trouble pronouncing words and he works his butt off in speech therapy and has since he was 18 months old.  To have Matthew tease him for his speech is a low blow, especially because it came out of nowhere, all Jacob was doing was putting pajamas on.

As Matthew admitted what he had done, Jacob burst into tears that he was going to get a suitcase and he was moving out of our house.  He cried and said he would only stay with a lock on his door so he could be alone when he wanted to and be upstairs without being teased.

Every family obviously has these moments we are not the only ones who struggle like this.  The difference is the intensity this all comes with and the pure exhaustion.  It is tiring to be Matthew's brother.  It is the same over and over and over again.  It is stressful, because the boys never really know when the anger is coming.  Almost every bedtime ends  with a mania moment for Matthew, so there is an odd teasing or name calling or increase in unpredictable behavior right before bed.  It is truly enough to make me uneasy each night, and I am the grown up.  I cannot imagine being Jacob and David and dealing with this every single night.  Every......Single.....Night.

Because Jacob is the brother who will react to Matthew, Jacob is the brother who gets bullied.  Jacob is the brother who is the target for matthew's intensity.  Jacob is tired.  He was clear tonight that if he got a choice Matthew would go to Healy House.

That is such a big statement from a 7 year old.  It is heart wrenching and yet it is a statement that I so completely understand.  Unfortunately, on top of Jacob already feeling tired, I just found out that Matthew's respite provider who works on Sundays is moving and so this would have been his last Sunday with respite, but it was cancelled because of the weather.  This respite truly has been a savior for us.  It has been the time that Jacob could have friends over, it was the time that Jacob could enjoy the quiet in the house.   I strongly believe that it has been the respite on Saturday and Sunday that has contributed to Matthew succeeding over the past few months, and now it is ending.

My hope is that by the end of January we will have a new respite person in place, but there have been many times that it has taken months to find a new respite provider.  It seems like it is one of the hardest jobs to fill, and we have been blessed to have some great providers, but the wait between providers can be full of anxiety.

I am so thankful that the last almost 365 days have been days of growth and development for Matthew and my entire family, but on a night like tonight even the growth that he has shown is still overpowered by the struggles he has.  I will keep working with Jacob to help him understand that which Matthew has control over and those parts of Matthew that he doesn't have complete control over.  I will help Jacob to understand that it is ok to feel what he feels, and that it is ok to be tired of being Matthew's brother.  I will let him know that at times I am tired too, and even more importantly at times Matthew is tired......because when we get right down to it......I believe that it is truly hard to be Matthew in so many ways.

Friday, December 6, 2013

my ears are roaring


I can't take it....from the very minute I get out of bed he is talking......talking about the insane....talking about things I can't think about before my eyes are opened and I have had caffeine......I wake up each day to:
"what's for dinner", 
"what are we doing tonight",
 "why are we having that for dinner?"
 "how come we aren't doing anything fun"
"we never do anything fun"

All of this repeated over and over and over for the 10 minutes until his bus comes.....all I have to do in the morning, before he gets on the bus, is make his breakfast and get him out the door, but it is the longest 10 minutes of my day.  

The longest 10 minutes until I get home and it starts all over again.  As soon as I walk in the house, even if the sitter has prompted him to let me come in and put my stuff down, it starts again....
"what's for dinner?"  My answer is almost always, "I don't know."  I don't honestly know...sure, I know if I am defrosting chicken or beef, but what exactly I am making I don't know.  Every single night, he responds by telling me what is for dinner......
IF YOU KNOW.....HOW ABOUT YOU DON'T ASK THE QUESTION....this is what I want to yell!

Instead, I explain that I am not ready to talk about dinner yet and I will talk about it in a few minutes, as soon as my stuff is down and I have greeted everyone.  As soon as I have breathed and transitioned from work world to home world.  As soon as I have touched base with the sitter about how the afternoon was.....as soon as I am ready!

Regardless, as soon as I tell him what is for dinner, his response is "ugh...can't we go out for dinner? why can't we go out for dinner?  I hate X (whatever I have said is for dinner!)" And every night we go through why we are not going out for dinner.  Why he will eat whatever is for dinner.  And, at dinner time he always eats it and wants seconds.......

Tonight we are at the end of Hanukah, and I get that it is exciting for him.  Really, I do understand.  That said, the more he is excited, the more I am drained.  

It was only a few years ago, that during hanukah he lit paper towels on fire many mornings in a row.  Now every time we light the candles, he reminds me that he "won't light paper towels on fire anymore". 

Honestly, it is a time in my life that was horrible.  It was the beginning of the descent into realizing I would be dealing with a child with mental health issues for the rest of my life and his life.  I don't want to be reminded of it every time we light the Hanukah candles.  I don't want to remember the emotions I felt as I found paper towels on fire in my kitchen.  I don't want to remember those dark days when I felt like I couldn't sleep for fear we would wake up to the house burning down.

On top of all of this, whenever Jacob and Matthew are together right now Jacob is screaming....an ear piercing nerve wracking scream...."he is looking at me", " he is talking to me", "he touched me", "he touched my stuff"!!!  My assumption is that Jacob is done as well....and I get that...but honestly, screaming    DOESN'T HELP!  It is like a hot  poker to my eyeballs!  It is insult to injury.  

I took Jacob to see a new psychologist the other day, and I am beginning to realize that Jacob may be dealing with a version of PTSD.  Jacob is amazing when we are in crisis.  He responds calmly and seems to just take each crisis in stride.  However right now,  when we are not in crisis, Jacob is truly living with no reserves.  On the way to temple tonight Matthew wanted jacob to close the car window, Jacob said no, and Matthew kicked Jacob.....pretty much a story like all brothers, except for Jacob's response.  He broke down in hysterical sobs and just kept saying he wanted to go home.   Truly sobbing, an extreme response.....sure it was not ok for Matthew to kick Jacob, but my much bigger concern is the response from Jacob.

The problem I have is that I am trying to figure out and balance what is causing Jacob's extreme response.

 Is it all due to the life he has dealt with over the past few years?
Is this a stress response?
Is it due to stress from school?
Jacob's learning challenges are becoming more and more obvious, and one of the things he told the psychologist is "I am dumb because I can't read".  (That was one of the saddest things I have heard one of my boys say in my 12 years of parenthood) The psychologist was great and we both told Jacob about Albert Einstein and other smart people who had a hard time reading.  Life wasn't fixed in 1 hour with a psychologist but I do think that this psychologist may be able to help Jacob over time.

For now, I am trying my best to destress life for Jacob, and to help him understand that his feelings are ok to have, but that his response to those feelings he is responsible for.  He is able to be sad, scared, upset, or to feel any other feeling he may have.  And I am absolutely here for him, however, I expect that he will use his talking words rather than his yelling, or screaming, if he needs me to help him.  He did a pretty good job meeting this expectation tonight.

I am planning to use the weekend to really focus and make some tough parenting decisions. Jacob's teachers suggested a tutor once a week to help him with learning issues.  I love his tutor, but I just don't know if after a full day of school a 7 year old needs an hour of tutoring.   Does Jacob see this time as "punishment"? Is it just playtime with a fun grown up who is working on learning skills?   Is it possible for Jacob and I to work on the same skills and decrease his stress level?  Would he be willing to learn as much from me?
So far he has only had 2 sessions of tutoring, one was great, one he came out with a soaking wet shirt form chewing on it the whole time.  Do we try it a few more times?  Again, just wish that there was a crystal ball so that I would know where Jacob would be a few months from now.

My only goal for all 3 of my boys is to ensure that they come through their childhood feeling self confident.  I want them to know that no matter how much they have struggled that they are smart, funny, loving,caring boys.  To me, this is what is important.  As long as their identity and self confidence is in tact, everything else can be compensated for.