IEP times 3= insanity......psychoed evals times 3 may put me over the edge

March......also known as IEP crunch time.   This was a stressful time for me when I had one child who I had to worry about what his programming would be for the upcoming school year.  Now that I have 3 children to program for, it is an all consuming freak out for me!

I feel like there are moments when I can hardly breathe if I make the mistake of thinking about planning for all 3 boys.  I am working hard to remember to breathe and that all decisions can be changed should things not go as planned.  

For Jacob, the plan is for him to continue on in a cotaught classroom.  He will again have a special education teacher in the classroom for 2.5 hours per day and there will be an aide in the classroom full time along with the general education teacher.  Jacob will also have speech and occupational therapy a few times per week. For Jacob, I have 2 main fears.  My biggest fear is that the cotaught class will not be held next year at his current school.  He has been at the same school for kindergarten and 1st grade and has made friends and I have made friends with many of the moms.  I just want Jacob to have the stability of remaining in the same school because I truly believe the consistency is incredibly important for him.

My second fear is that he won't get a special education teacher who understands Jacob the way that the teacher he has had for the past 2 years has.  Jacob lives a stressful life.  It is so important that he has a strong relationship with someone at school who can read and understand him and just give him that extra touch of support when things at home are tricky.  His current special education teacher has been a huge gift to him and has been easy for me to work with.  I would just love one more year with her as we continue to figure out what Jacob's learning issues are and as we get him through the introductory learning phases of math and literacy.

With David I truly don't know what is best for next year.  There is a huge part of me that wants to trust his teachers and just continue with an in district placement for him for 5th grade.  That said, what if there is a better placement for him out of district?  A smaller class size?  A more similar group of students where his learning style can be better understood and he could begin to understand simple basic math concepts.

My "mom gut" is screaming to advocate for an out of district placement, but the teachers are saying he is doing well and that the current placement is good for him.  I can't completely express in words why I think he needs a change, I am mostly worried that I am missing an opportunity for him.  He hasn't made improvements in math in years.  I would love to see him in a 6 child classroom.  I really think that an opportunity like that, even short term, would allow us to see if David is in the best placement currently.

Matthew is the child that I am most worried about.  His is still up and down.  Some days he struggles at home, other days he struggles at school.  His teaching team is recommending that he go from a 4 student class with 3-4 adults to a 6 student class with 3 adults next this summer and next year.  if I had a crystal ball, I would know what was right for him.

My biggest concern is not only will he be changing class sizes, but he will also be changing schools.  I am trying to convince myself that I need to have faith and everything will work out fine, and if it doesnt work, that we can always change programs.  Unfortunately, my worry is that if we change class sizes and he changes schools, I will have to get to know a whole new school full of people and then they will have to get to know Matthew, and we will go through all of the reasons he is struggling, and hypothesizing blah, blah, blah and THEN I will have to talk to them about getting him back into a classroom with 4 students....that is a potential for A LOT of time to pass and time to be wasted while Matthew struggles.

However, if he can succeed in a classroom with 6 students, than that would be great because Matthew would have more opportunities for friends in a larger class size and that would be the biggest gift for Matthew.

Shoulda, woulda, coulda

If you are going to share one of my posts, I hope that this is the one you will share.  This is the one that describes my rawest emotions as I deal with the Matthew I am raising now, rather than the Matthew I had as a baby.  This is the one that will help you to best understand how the hell of bipolar and developmental disabilities impacts not  just me, but Matthew himself, and our family at large.  This is the post that hopefully will help make it real, that will make it "not just something that affects someone else", but rather something that could just as easily touch you too."

We are all just one step away from a problem that we didn't expect to deal with.  It could be cancer, it could be mental illness, it could be a death in the family, it could be anything, but each of these issues are crushing and each of them impacts you at the core of your being.

The difference is, when it is cancer, people set up a support system.  They bring meals, they offer child care,  they understand that the parent is torn between caring for their child who is ill and their children who are at home.  It isn't perfect, because when a family is touched with any illness or death, people are afraid, but I think that there is a prescribed response, and an expectation, that the family is busy in and out of the hospital caring for the sick person.

When it is death, there is a recipe for how to help the grieving family grieve, at least in the short term.

When it is mental illness, the expectation is that the family will just keep going.  My son has not been home for 2 weeks, and I have heard from very few people.  I dropped him off at a respite placement, because he was unsafe at home, and I went to work.  And I have been at work each and every single day.  And I have been happy, and and I have kept plugging along, because that is what you do if your son has a mental illness, because it is "the unspoken", it is the thing that people don't want to touch.  It is the thing we keep at a distance for fear it will impact us as well.

For me though, it happened.  It happened to MY baby.  It happened to the boy I bounced around on my knee, to the one that I love with all my heart and soul.  It happened to the boy who sings and dances.  It happened to the boy who makes people laugh.  It happened.  And it is dark, and scary, and disasterous, and it is something I have to deal with, and worry about, and fear.  But it is our life, and we will get through it.

I understand keeping us a little at a distance because mental illness "looks weird", it is "that thing we see in the movies", or that thing "Uncle George has", but it is not going away.  Matthew was fine one minute and then he was not.  He was laughing an odd laugh.  He was up in the middle of the night.  He was angry over nothing and aggressive.  He is cycling the cycle of bipolar.  Right now I am talking to him on the phone each day and some days he is too tired to even talk, and other days he is so flat it is not really him and then other days his speech is so fast it is uncomfortable to even be on the phone with him because I can feel his heart racing through the phone.

It is bipolar.  It is ugly.  It is not going away.  He is getting bigger.
                                             I cannot predict our future.  It is not going away.
                                                           It is scary for me.  It is scary for him.  It is scary for his brothers
                                                                          It is bipolar.

The hardest part right now is that I have learned that once he is 13 there is no respite like Healy House.  I will have no options when he cycles.  He will stay at home or go to the psychiatric hospital.  The problem is that in the hospital all they do is change medications and they change them quickly.  The insurance companies insist that they make change each day with the goal being to get the patient home quickly.  Medications take time to work.  Medications cannot be changed quickly.  What will I do in 6 months when we are not safe?

The one thing I know about my son is that he would never, ever, ever hurt someone if he was in control.  EVER!  He has the heart of a champion.  That said,  mental health issues combined with his developmental disabilities he got hit with the double whammy from hell.  He has no control, and he especially has no control when he is upset.  And when he  is in a bipolar cycle, his mood goes up and down in hours, not days.  He can be up and fast, and then down and angry and then flat and sad.  He is not in control of this.  That is the one thing I know for certain.

My son is an amazing drummer.  Had he not been hit with this double whammy he would have been the star at the school concerts-----the star.  He is incredible.  Instead, he is at a school that has no band, no music program.

My son has a memory for details that would amaze you.  Unfortunately, it is not details that matter in school.  He can tell you where we were and how to get somewhere even if he only went once 10 years ago.  He can remember your name, and details about  your family.  But he can't remember basic math facts. He could have been one hell of a class president, but he wont be because of his mental health challenges.

He is strong, and loves to play sports.  He would have been one heck of a baseball player.  But his brain doesn't understand the game.  He plays now because his coaches have been awesome, but there are limits.  He doesn't understand who to throw the ball to.  He asks too many questions.  He could have been a great player and a well liked player, but his limits get in the way.  For now he is tolerated, my hope is that this will continue.

All I can ask of you is that you embrace families who struggle with mental health or developmental challenges.  They will tell you they are fine.  What else are they going to say?  They will give you the quick update.  The real update is too scary.

Mental health issues are like any other health issues.  Except you can't see them, they are the invisible struggle.  It is easy to blame them on parenting.  It is easy to assume that "you could do it better".  If it was fixable, I promise I would fix it.  If I could do it differently, I would.

I adopted Matthew with my heart ready to love a baby boy.  He was the reason I adopted David and Jacob, he wanted brothers.  When I look back to his baby years, before our world collapsed when he was 3 and I realized how significant his delays were, my hopes for him were so high!  My god, he was the mayor....he made the world laugh!  Even through first grade he was a riot!  He was Matthew!  He was an awesome kid.

He still is an awesome kid, but his struggles are intense, and his roller coaster has huge ups and downs.  We are riding the ride, it is the ride I got a ticket for.  And we will ride it well, but please remember, at any time, you too may get the ticket for this roller coaster ride, and you would want to have someone to tell you it will be ok.  To remind you that there is a safety net in case you fall.  To remind you that it is not your fault.

You may need all of these things, even without asking.  And sometimes, you may need more and sometimes you may need less.  This is the ride with no line, no one is waiting to get on this ride.  You weren't waiting either, but it is the ride I got a ticket for, and it is the ride I am on.

My son has bipolar.  My son, my baby.  The one I had hopes and dreams for.  The one who could have been a rock star, or class president.  My boy!

(In reading this you may think that I am depressed or angry or some other extreme emotion.  My emotions are on a roller coaster ride along with Matthew's.  Today is a good day.  It is a snow day and I am getting a wonderful opportunity to just enjoy some time with David and Jacob.  We are alternating between enjoying the quiet and enjoying each other's company.

 I am ok.  I am strong, and I am knowledgeable and I am up to the challenge of being Matthew's mom.  That said, at night, as I try to balance talking to Matthew on the phone and adjusting to where he is emotionally, and feeding the other boys dinner, and tucking them into bed and walking past Matthew's empty room, of course it is hard.  As I worry that I am not there to monitor Matthew as he starts a new medication of course it is hard.  It is hard to deal with invisible issues.  If I can help one person to understand that and if they help one family who struggles, then I consider that a success.

Mental health issues are scary, they are intense, and they are invisible.  Families cope because there is no choice.  I am ok, my other boys are ok, and Matthew is in a safe place.  Life will be harder in 9 days when he comes home and there is no safety net.  My hope is that the bipolar cycle will have settled and the meds will work.  That is what I can hope for, until he comes home.)

mental illness is forever

The descent into mental illness has returned.  It was almost an entire year since Matthew's last placement at Healy house or in the hospital, but on Thursday Matthew went back into Healy House so that he was safe and so that the rest of us were safe while we try to get some new medications to work.  What is strange is how quickly the demons of mental illness came back this time.  Two weeks ago I thought Matthew had an appointment with this psychiatrist and I called to cancel it because he was doing so well.  Not two days later, the laughter of mania had returned and so had the hostility and explosions.

The descent into a bipolar episode breaks my heart and raises my anxiety.  The problem is that there is no predictability or structure that goes with the bipolar episodes.  He can be happy and sweet and gentle and loving one moment and within minutes Matthew can be up or down.  As he starts his descent the first thing I notice is that Matthew stops sleeping.  He goes to sleep at night because many of his nighttime medications make him tired,but he is awake again at midnight and at 2 or 3 and then is up for the day at 5 AM.  For an entire week, Matthew was up at 5, and wanted to be downstairs watching tv.  Unfortunately, when he gets up at 5, he wakes the whole house at 5.  There is simply no reason for all of us to be up at 5 am listening to the Wiggles blasting or hearing whatever other tv show Matthew was obsessing about.

He walked around the house for almost a week repeating a mattress commercial over and over and over and over again.  Each time he said the tag line he laughed like it was the first time he had heard it.  He kept rubbing Jacob's head each and every time he walked past him.  He seemed obsessed with touching Jacob hundreds of times throughout the day.

It quickly became obvious that I was going to need Matthew to be supervised more than I can supervise him while he goes through this cycle.  He needed to be somewhere where there was staff who could watch him when he was up at 5 Am, and somewhere where people could help support him when he got angry without the little boys having to watch him explode.  Once again I was faced with the hell of finding and accessing care for my son with mental illness. Once again I was reminded of the hell of jumping through all of the hoops.

Of course, I am just the mom, so I cannot make the referral for him to go to Healy House.  Of course the school counselor cannot make the referral to Healy House.  Of course there is a mass of paperwork to be gathered and things to do, but there is no way of knowing until it is all done whether there even is an opening at Healy House.

Thankfully our service coordinator heard my intense need for help and in less than 24 hours he had gathered all of the paperwork and we found out that there was an opening for Matthew to go on Thursday.

Since Thursday, it has been really strange.  I have seen Matthew each day because he has had a few appointments to go to, but there has also been this odd feeling.  When I brought Matthew to Healy House, he walked in like he was going to see a long last friend.  He was and still is very detached.  he will say over and over again that he misses me and his brothers, but it is all said very unemotionally.  It is basically just rote.  He will say that he wants to come home and he will tell you how many more days he has left at Healy house- it is a 3 week program- all with little emotion more just repetitive conversation.

I left him at Healy House on Thursday and went to work.  It felt strange, and like this has become too routine for us.  I remember leaving him the first time and sobbing, and wanting to go back and get him.  This time, I knew he was safe and I knew that he was where he needed to be but I still felt like I had been punched in the stomach.  However, I have not told many people where Matthew is, it is like he has just vanished.  I have just gone along with life, going to work, and doing our other daily activities, but one person short.  The house is quiet.  very, very quiet.  It is calm, and it is what I need, and yet I feel guilty saying that.  The little boys have been sleeping late, it is like they are catching up on a lot of missed sleep and they are enjoying the more predictable rhythms of our house.

That said, when matthew calls, Jacob asks to talk to him and is eager to hear what he is doing.  No matter how stressful Jacob finds Matthew at times, what is certainly true is that Matthew is Jacob's big brother and Jacob, like all little brothers, loves his big bro.

We saw the psychiatrist on Saturday and he started Matthew on some new medications and is taking him off another medication.  We have another 2.5 weeks while Matthew is at Healy House for these medications to start to work and for this cycle to end.  My hope is that over the course of this week we will see changes start to occur and Matthew's moods will level out.

supporting Jacob

One  of the things that I have realized about Jacob,and to a lesser degree myself recently, is that as life with Matthew has settled down, he has started to be more on edge.  In some ways it seems as if all of the stress over the last few years that there was not time to process or cope with is finally being processed.  Jacob is responding to Matthew recently like he is being poked with a red hot poker.  A two week winter vacation was the straw that broke the camels back for Jacob, and for him family bonding became too much togetherness.  Since vacation,all Matthew has to do is walk by and Jacob is screaming.

Two weeks is a long time to have all 3 boys without their normal schedules, especially because both Matthew and David truly depend on their routine and structure.  That said, I tried hard to create some structure to each day and to ensure that we had an activity each day that got us out of the house and active and on our best days, we were with friends.  Even with daily activities though, there was a lot of togetherness and a lot of time at home for the boys to just be together.

Over the course of the 2 weeks, Jacob's ability to cope with life deteriorated.  I truly think he is just exhausted.  I think Jacob is more a child who likes to think, and create, and like many good artists, he enjoys the quiet and he could spend hours just creating and being with his materials.  Unfortunately the being that is Matthew, doesn't allow for the quiet that Jacob requires.

When Jacob saw his therapist tonight he told the therapist that he is scared; always scared when he is with Matthew without a grown up.  As a mom, this is heartbreaking.  What is hardest is that every parent has moments when they leave the room or their children are not being supervised closely, especially when the children are 12, 10 and 7 years old.  It would be impossible for me to cook, do the laundry and do all of the other things moms do and have my eyes on the boys 100% of the time.  However, to hear Jacob describe it, this is essentially what he needs.  Whether it is real or not, Jacob is afraid whenever I am not in the room.  He says that this is when Matthew teases him or picks on him and then when he tries to tell me or get help, Matthew hurts him or threatens to hurt him.

As always, I am trying to balance the fact that all boys fight, and tease, and threaten each other with the fact that I have a 12 year old who has been aggressive, and a 7 year old who feels scared.  I am consistently trying to ensure that Jacob knows that I am here for him, while also realizing that in every family there will be a certain amount of rivalry.

What amazed me, and the therapist tonight, was when we were talking about Matthew, and how we were going to implement some techniques to help Jacob to feel safe, Jacob told the therapist that all we have to do is get the alcohol out of Matthew's brain.  I have been honest with Jacob about Matthew's struggles, so I knew that he knew that Matthew's challenges were caused by his birthmoms use of alcohol during her pregnancy, but I didn't realize that in Jacob's mind he thought that if we just took the alcohol out of Matthew's brain it would all get better.

The therapist explained to Jacob that you can't just take the alcohol out and that the challenges for Matthew will always be there, but that we are going to all work together to help everyone be their best.  I promised Jacob that I would be more careful to keep Matthew and him separated.  Most nights I try to clean the kitchen while the boys get their pajamas on, but from now on, I will send Matthew up first and then I will send up David and Jacob to get their pajamas on.

I am so lucky that Jacob is able to express clearly, when he is calm, what he is thinking.  I am beyond thankful that he could tell me tonight what he needs and how I can help him to feel safe.  Every person should feel safe at home.  This is a basic human requirement.  Home is where you rejuvenate, kick back and relax.  At this point I need to focus on ways to build Jacobs feeling of safety at home, and to build his confidence that he is safe.  I also need to help him relax and  continue to build a bond between Matthew and Jacob that is built on a premise of kindness, safety and brotherhood.

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!

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.

my ears are roaring

THE BOY IS IN BED!  IT IS THE ONLY TIME HE IS QUIET!  HONESTLY, THE.....ONLY....TIME!

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.