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, April 22, 2014

I just want to be the mom

I just got back from seeing a program for Matthew for next year, and i am so tired of leaving educational meetings crying. There is simply too much for one person to shoulder as I make these decisions for my children and too many variables for me to gather the necessary information to feel like I am making informed decisions.

Matthew has not had a great year this year.  he is in a classroom with four students, a teacher and 2 teacher assistants (4:1:2) , and since January he has been really struggling.  What I am hearing from the school staff is that he is struggling in response to the other children in the classroom, so they are recommending that next year he should be moved to a classroom with 6 students, 1 teacher and 2 teacher assistants (6:1:2).  The school staff feels like the peers in this group would be more appropriate for Matthew.

Certainly, the group Matthew is with this year is not the best for him.  However, last year he was in a 4:1:2, and he had a fantastic experience.  What I would like to see happen is for him to go to a 4:1:2  next year, and be mixed with a more appropriate group of children.

For the Fall, Matthew is most likely moving to a different school building which will be a large change for him. New physical surroundings, new people, new routines.  To decrease the support he receives at the same time that these other changes are occurrring seems to be a mistake to me.  It is simply one too many variables.

Additionally, in the program for next year, the classes are set up so that Matthew would have 1 teacher for english, 1 for math, 1 for social studies and 1 for science.  This adds in 3 extra teachers to Matthews day which is just more variables to cause stress or confusion for Matthew.

At our team conference, when the different teacher concept was introduced to me and his current teaching staff, the team for Matthew all seemed to be concerned that it was too much change for him, and we appeared to be closer to agreeing to a 4:1:2 for Matthew.  After our visit today, the team seems to be thinking that Matthew will adjust to the changing of teachers, and are planning to recommend a 6:1:2.  What are they basing this on?  Just a feeling.  A hunch.  They think the peers in a 6:1:2 will be better for him.  What if they are not?  What if he still struggles?  What if they are wrong?  They wont be there next year to deal with the fallout.  They wont be there as I struggle to determine whether it is the wrong class, wrong medications, or something else causing the struggle.

Now what do I do?  I have always felt like I know my boys best.  I have often struggled with the plans that make the most sense for them, but in the end my gut has been on target.  But what happens when the teaching team and mom disagree?  I can't seem to get an answer to that.  Apparently things are then decided at the CSE meeting.  Who is at the CSE meeting?  The teaching team, mom and a CSE chairperson.  So, essentially how is the decision made?  We discuss, we share our thoughts, and then what?  I don't want to be swayed.  I want Matthew protected 1 more year.  I want him to thrive before we change his classroom set up.  I want him to feel success.

I want to be just the mommy to my boys.  I don't want to be the educational planner or the  psychiatric adviser.   I don't want to be the one that does this all.  I don't know how to.  I am so tired of the fight.  I never know who I have made angry and who I have on my team.  How much disagreeing makes me "impossible to work with"  and how much makes me a strong advocate.   I am often misread when I am feeling emotional.  I have been told I come across as angry, when in reality I am feeling scared.  I hate to cry in front of others, or show emotions, and often as I hold in the tears, things begin to go badly.

Unfortunately, as I am struggling to make this decision for Matthew, I am just completing the process of having David moved to a different classroom for next year.   For 3 years I have suggested that David needed to be in a more restrictive setting.  For 3 years I have been told he was in the right class and was doing well.  Finally, this year I insisted that I wanted to see another option.  I wasn't ok with David doing "well".  I wanted him to thrive and to succeed.

What happened when i saw the more restrictive class?  It was perfect.  It is where he should have been for the past 3 years.  It is highly individualized.  Toileting plans and self help skills are built into the program.   Members of his current team actually commented that they didn't know why David wasn't in this group to begin with.  Why does it take so much fight?  Why does it take being so insistent? Why did I have to be the one to suggest the change again for David?  Why was it approved this year and not really entertained last year?  What has he lost that he could have gained by being in this more restrictive setting in the past?  Why didn't I fight harder then?  How do I get past my feelings of letting David down and regret that I didn't work harder to help him?

I am just a mom.  I can research and look at what programs are available.  I can do all of my homework, but no matter what i will never have the inside scoop.  I have to rely on the professionals to know the inside details, but sadly, they don't always have the knowledge needed either.

When the professionals are confused, what is a parent to do?  If I had been told today, "here is the class matthew would be in next year" then I could evaluate and we could make a decision.  Instead, we will know nothing until the end of August when classes are made. At that point it will be too late.  It is too much transition for Matthew and too much unknown.  I am trying to go ahead with blind trust and hope, but my gut is screaming that a larger class would be a mistake for him.

Our meeting to decide Matthew's placement isn't even until the end of May, so for now I just need to wait and see what continues to happen as this unfolds, which only causes me more anxiety.  I will continue to monitor how Matthew is doing in his current placement and to talk to his teaching team to monitor their thoughts, and see if we can reach an agreement.  Hopefully something will happen that will either make me trust that he is ready for the larger class or the teaching team will decide that a smaller class and fewer changes make more sense.

Monday, April 21, 2014

roadblocks and u turns and the hunt for a psychiatrist

Finding a qualified pediatric psychiatrist is next to impossible.  After many years working with a doctor who I did not feel like understood Matthew, I had finally found a new psychiatrist for Matthew who I really liked.  I found him to be  a doctor who listened, who was accessible and who worked really hard to get Matthew off of medication.  He trusted my gut, and held Matthew accountable for some of his behaviors while also understanding that Matthew needed a medication cocktail that supported him.  The doctor seemed to have a strong understanding of the new psychiatric medications that might help Matthew, as well as the old medications with proven track records, and he personally answered my phone calls and emails when Matthew was struggling.  I was at peace, and felt like I had a team mate in this new psychiatrist.  All was good, until Matthew's insurance changed.

Matthew qualifies for the Medicaid Waiver program as a child with developmental disabilities and he has CDPHP insurance.  This doctor finds CDPHP hard to work with, and so as of January 1, 2014, he no longer accepted Matthew's insurance.  For a few months I paid out of pocket for Matthew's visits and I thought that this would work long term. However, in March the doctor suggested that Matthew was doing well and could be followed by one of the Nurse Practitioners in the practice.  This NP accepts CDPHP and I assumed that we would still be working as a team with the NP and the Psychiatrist, and so with some anxiety, I agreed that we would try to have Matthew see the NP.

Tonight we had our first appointment and all I wanted to do was run out of the room.  The NP started out by asking Matthew a variety of questions: ( Matthew's answers are in italics)

  • Do you sleep well?  I go to bed at 7:30, my mom likes to have down time, so then when we go to bed she gets to watch tv.  I like to watch tv, but she says we have to go to bed at 7:30.
  • But when you go to bed, is it easy to go to sleep or hard? Well it is easy, it usually takes a LONG time.  I go right into my bed and fall fast asleep.  Well, last night I called my brother names, and then teased him, and then I went to sleep, and I slept from 7, 8, 9, 10.......5, 6......so I got a lot of sleep.  I got up at 6 and listened to my ipod.
  • Are you worried a lot? I worry about a lot of things, like monsters and nightmares.  My babysitter says you can have nightmares if you eat M and M's at night.  But I don't worry a lot.  I do worry if my old teacher likes me.  She talks to me but only sometimes.  She was a really nice teacher, but some of the kids in the class were nice and some were not.
  • Do you think your medicines are working? Yes and no.  Sometimes I am doing ok, but other times not ok.  I want to take medicine at school because then I would behave in gym class.  I like gym class, it is where I do my best.  I like to play basketball, baseball, and catch.  My friends take medicine at school.  It was the first day back after vacation.
As I listened to Matthew respond, I realized I needed a few moments alone with the new doctor.  I had to get a sense of what she was thinking and what she knew from the Psychiatrist.  I had to know what they had discussed and also let her know that Matthew may not be the best source to help decide medication needs because he is just not always that aware of his own behavior.  

When I asked if the NP and the doctor had spoken, I was shocked to hear that they had not talked about Matthew at all.  No plan had been formulated for Matthew's care.  No thought had been given to explain to the NP why he was on the medications he was on, and what the doctor thought would be best should Matthew be struggling.  These two professionals work in the same practice and yet there had been no carryover of care for Matthew. 

The NP immediately suggested increasing one of Matthew's medications based on the fact that Matthew was struggling more at school recently.  However, today was the first day back from spring break. Over spring break we took a trip to Boston and spent the entire vacation together with very few issues, even on the car ride to and from Boston.  Given that, I was in no hurry to make medication changes.  I was certainly in no hurry to make a change without a strong understanding of why the change was being made.

As the NP heard my concern about the med increase, she suggested that we could do blood work and check the medication levels in Matthew's system currently.  As she was talking about this, the NP picked up the phone to call the pharmacy.  Without any conversation towards me at all, the doctor asked the pharmacist what brand of  Lamictal Matthew was taking.  The pharmacist answered and the NP hung up and laughed, "phew, he is on the ok one".  When I pushed, I learned that there is a brand of lamictal that the NP thinks is not as good as others, but she was relieved that Matthew wasn't on that one. ( Why there would be  a brand of medication that is not as good as others, I do not understand at all.  I would assume that Lamictal made by one company would be the same as Lamictal made by another company).

After hearing my concerns about increasing any of Matthew's medications, the NP started to say that there were other medications we could try for Matthew.  When I asked what medications she was thinking, the NP suggested 2 medicines that Matthew had already been on and had bad reactions to.  Shouldn't she have known this?  Why would we put him back on medications that he already had tried? 

Finally, the doctor ended the appointment by saying that if I wanted to, we could just keep Matthew's medications the same.  I felt like crying.  If I wanted to?  What did that mean?  These are intense medications.  It has nothing to do with what I want.    Jacob was just diagnosed with strep throat.  The doctor used his professional judgement and prescribed an antibiotic for him.  He didn't ask if I "wanted" him to prescribe an antibiotic.  He didn't ask which antibiotic I wanted. He didn't prescribe the antibiotic that Jacob is allergic to.  Shouldn't I expect the same high quality medication protocol when we are talking about dangerous pyschiatric medications?   Shouldn't the same care be given by the NP to ensure that Matthew is on as little medication as possible?  

As we left the appointment with only a script for blood work, I asked that we be transferred back to the Pediatric Psychiatrist.  I wasn't thrilled with the fact that he had passed Matthew off, but I do trust his medication management for Matthew, and so I figured he was the best choice to just return to.  I was told however that once you change doctors you can't change back.  

What about the fact that I didn't want to change in the first place?  What about the fact that I changed from a true doctor to a Nurse Practitioner?  What about the fact that the NP almost prescribed medications my son has had bad reactions to?

Apparently, the secretary can ask the dcctor if he will see matthew again, but I should not get my hopes up.  So for now, I am going to be looking once again for a new Pediatric Psychiatrist while I wait to hear if our old doctor will take us back.

I have 30 days worth of medication for Matthew, so 30 days for me to find a new doctor or sweet talk our way back to the old doctor.  I have 30 days to hope that Matthew continues to do well, and to ponder what our step will be if he doesn't.  

Sunday, April 20, 2014

Losing me

Over the past few weeks I have had an overwhelming sense of not knowing who I am anymore.  When people ask about me how I am,  mostly I answer in regards to the me who I am as a mom.   My days are filled with work and often phone calls about the boys, or emails about the boys.  Especially at this time of year as I am working on IEP's for each of the boys,  I feel as if my nights are overwhelmed by thoughts and fears for their future.  I feel as though time for Amie and just figuring out who I am and what I want next in my life has become lost.

I am finding myself desperately needing time away and time just for me, but even the simple act of planning for that time is exhausting  I have to find a babysitter.  I have to make a plan, and then I have to make sure that what i am doing is really "worth it" so that I don't feel like I am wasting money that could be better spent for something else.  I don't even know what it is that I want to do at this point, I just am finding myself wishing for 48 hours when I could just turn off the world and escape for a little while.

I would love a pedicure, a good book, and some good conversation, coupled with some some window shopping or even a massage!

Monday and Tuesday this week I have the days off to myself, and I was hoping that those two partial days before the kids get out of school, would be enough down time for me to rejuvenate, but as it turns out, I am going to look at a new school for Matthew on Monday,  and Tuesday I have appointments, so even those 2 days are not going to be able to be set aside just for me.  I am hoping to take some time over those 2 days to do whatever i want, but even now as  I sit here on Sunday evening, I am not sure what it is that I am wanting to do.

Part of me longs to get in the car as soon as the kids are on the bus and just drive.    No destination, no plan, just a variety of lefts and rights, ending when it is time to refill the tank or the sun goes down.  Another part of me wants the ability to not get up and get dressed and simply wants to just lounge watching trash tv.  That sounds delightful, but my guess is that I will spend a large part of the day obsessing over how the boys are doing at school, or Bar Mitzvah preparations, and the day will be gone before I know it and  I still will be left with a yearning to find myself.

Hopefully when I get up in the morning, I will have a strong sense of where I am supposed to go, what i am supposed to do and how best to use these 2 partial days to rejuvenate my mind, body and spirit.

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.