About Me


I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Wednesday, November 19, 2014

have i done it good enough for me?

I feel like I am stuck.  I often feel like I am at the top of a parenting cliff with Matthew, and I am avoiding us falling down.  Unfortunately, I am not the only one who is responsible for the decisions that keep us teetering at the top of the cliff, and I am not the only one who will be responsible if we fall, but i will be the one to shoulder  the load, as I am Matthew's mom.

The biggest problem when you are raising a human being is that they are constantly being molded and formed by everything around them.  From the food they eat, to the songs they listen to , and the company they keep, everything is impacting the development of the human brain.

If I had my way, I might choose right now as the best time to put Matthew in a bubble of sorts so that I could have complete and total control over all of the things that impact his development.  Honestly, if I was independently wealthy, I may choose now as the time to take Matthew from school and home school him as a way of purifying his environment.  I am not sure that I could do this and maintain my own sanity, but, as a mom, I would give up anything for my children, and in this case, while it might mean giving up my sanity, it might mean saving Matthew and I am willing to risk my sanity to save my son.

I am constantly trying to figure out right now how much of Matthew's struggles are developmental in nature, how much is due to mental health instability and how much is potentially Matthew's response to being surrounded all day by other children with challenges and mental health instability.  In Matthew's school it is fairly common for children to be out of control.  It is fairly common to be in a classroom with a child cursing, and being  disrespectful towards staff and other children.  It is common for their to be a child in crisis.  Given that this is all common place, I find myself wondering would Matthew's behavior be the same if he was not exposed to the chaos of his school?

Would Matthew curse at adults if he wasn't surrounded by cursing at school?
Would Matthew lash out verbally and physically, if lashing out was not something he was exposed to daily at school?
Would Matthew treat teachers with disrespect if he wasn't seeing others treating teachers with disrespect?

Could Matthew be a different kind of student?  Could Matthew be on a different path?

I have begged our school district to allow Matthew back into a district classroom.  I have begged for him to be educated again inside a typical school building.  I have begged for him to be educated in a school environment that offered him opportunities for music education, for interactions with typical peers.  I have begged for him to be educated in a school that did not have rooms where children are locked in when they are out of control.  I have begged them to let him be back in a school where he was not witnessing children being restrained by adults when they are out of control.

How would Matthew be different if he wasn't exposed to these things?  How would he be different if he wasn't exposed to the language and behaviors he is surrounded by daily at his school?

I know that given his diagnosis, there are challenges that Matthew is likely to face.  I also know that Matthew was a child who struggled even when he was in a special education class within a typical school setting.

I know that given his diagnosis, Matthew is a child who is likely to struggle with limits that are imposed on him.  He is a child who is likely to struggle with self control, and attention to work.  he is a child who is likely to be impulsive and reactive.

What I don't know is how much his current educational setting is impacting Matthew now and how much it will impact Matthew in the future.  I have always felt like Matthew needed to be shown things in black and white.  There is a right and a wrong.  For Matthew, it was important that these distinctions be made clear.  In Matthew's current school setting there is a lot of gray, and Matthew does not understand gray.

I don't have all of the answers for Matthew.  I wish I did, it would make life easier.  Last night as he cursed at me for over an hour I was unsure how to respond.  I have learned over time that the better I am at controlling my own responses to Matthew's behavior, the better I feel about the situation.  I have learned that for David and Jacob it is important for me to remain calm, especially when Matthew is out of control.  However remaining calm when your child is screaming and cursing at you is a huge challenge.  I wanted to scream back.  I wanted to ask him who they hell he thought he was, and why did he think he could talk to me that way.  I wanted to ask him what the hell he thought he was doing calling me names and cursing at me, but I know that in those moments there are  no answers.

Matthew is lost in Matthew.  I wish that Matthew was surrounded by people all day long who modeled how to have self control.  I wish that Matthew was surrounded by people who modeled using nice language, and appropriate social interactions.  I fear that Matthew is responding and getting more and more lost because of the negative interactions he witnesses daily.  I worry that he has come home and told me yesterday and today that he saw his friend be restrained.  That his friend had a crisis.  That crisis staff was in his room.   Today the police were at his school.  He asked me if I knew they were there.  Were they there for him?  Were they watching him?

I worry that he is asking me repeatedly tonight whether the police are coming.  I worry that he is asking me whether he is going back to the psychiatric hospital.  Are these questions his way of telling me he needs help?  Are these questions his way of expressing that he feels out of control?  Are these questions just questions?

I have no answers.  I have my gut instinct, I have my hope and my faith and I have my worries.  I am hoping that Matthew is going through a time of testing his new classroom.  he has been in this room about 3 weeks, so it makes sense to test the staff to see what will happen.  I am hoping that Matthew is just going through a pre thanksgiving bump in the road.  This is his rough time.  Halloween through Hanukah, these are the challenging months for my boy.

I am hoping that with love, consistency, and patience that we can get through this, and take a few steps away from the edge of the cliff.  I am hoping that his teacher and I can find our way together, I will forge ahead and try to build a relationship with her even though my entire being wants my boy out of this school.  I will forge ahead because for now she is the teacher who is spending 6 hours a day with my son, and for those 6 hours she is at the helm of the ship, and she is balancing him on the edge of the cliff.  I will forge ahead because hopefully she is the person who can be my partner in finding him a more stable educational setting for the future.  I will forge ahead, because for now I have no choice.

This is the placement the district is offering, it is the only one they are putting on the table, and so for now, I can only forge ahead towards the future.

Saturday, November 15, 2014

Life in the trenches

Last night I read an article about a family in Canada who had to surrender their son with Fetal Alcohol Syndrome to the equivalent of CPS in order for the child to be placed in a group home with the appropriate supports.  A few years ago, I would have been horrified by such a story.  I would have blamed the family.  I would have assumed they hadn't tried hard enough.  I would have done all of this as a way to protect myself from the fact that living with FASD is really hard.  I would have done all of this as a way to protect myself from the reality that it may get even harder as time goes on.

This week, things got harder and they got more real for us.  What happened doesn't really matter, because truly it could have been any situation with Matthew.  Essentially life happened, Matthew got mad.  This time Matthew was with his after school babysitter when she placed a demand on him that he get ready to come and meet me, and so this time the situation wasn't just between me and Matthew and the boys.

While I may have decided it was unsafe to take an angry Matthew in the car until he calmed down, the sitter decided to have Matthew get in the car and she drove to meet me.  The entire way he was threatening her.  His language was horrible.  He threatened physical assault, and he raged throughout the 10 minute drive.  When I met up with them I was met with a fuming Matthew.  He raged at me and threatened to hit me.

We met at a local day care center so that I could get my boys and the sitter could pick up her nephew, and so I did my best to keep calm and just try to get us away from the child care center, in my mind that was of the upmost importance.  Matthew cursed, I tried to remind him to be quiet as little children were around.  Matthew waved his fist at me, I tried to remind him to calm down.  Matthew punched me in the back.

At that point the sitter called 911.

I wouldn't have made the call to 911 at that point, not because I think what she did was wrong, I don't, but more because what I have realized is that there is nothing the police can do to help us.  Matthew typically calms down soon after the police are called, so that is a benefit, however then we have to stay and fill out lots of paperwork, and we talk through with Matthew what he can do differently next time, but then the next time comes and Matthew gets just as angry, and forgets all we have talked about.

This time however the police were more real with Matthew.  I'm not sure if it is because this incident took place in public or because Matthew had physically threatened a non family member or why this time the police were more focused with Matthew on what could happen in the future, but I do know that this was a wake up call for me.  One day, it is likely that I am going to see my son interact with the police and I am not going to have the control over the outcome.  Read that sentence again.....focus on it and pray I am wrong.  I hope nothing more than to be wrong about this prediction.  However, given Matthew's rages and his size and his mental health issues, it is becoming more and more a reality to me that my son will likely end up interacting with the police at some time in his adult life.  All I can do is hope and pray that the officers understand that at the root of life Matthew is a good boy.

Sunday, November 9, 2014

Don't take normal for granted

I am not sure if it is easier or harder on those rare times when I  have a break from our normal world and get a glimpse into the world of parenting typical children.  This weekend I spent a lot of time in the world of typical parents, and typical children and in that world I found it oddly uncomfortable and awesome all at the same time.

My weekend started off with plans to go to First Friday Shabbat at Temple because they were celebrating the November birthdays and Jacob was born November 1.  On the way there, the boys were fighting in the car. Likely I should have just gone home at that point, but I was in need of some Shabbat peace and calm and so I pushed on to get us to services.  Sadly, no sooner did we walk into the social hall then Matthew realized that he could not sit where he had planned, and he lost his mind.
It is a very alienating feeling to be in a Temple filled with over 100 people and have no one offer help.  He was screaming and cursing and saying horrible things and it felt like the world was watching, but no one stepped forward to help or to talk to him.  We eventually drove home before services, Matthew was aggressive and cursing the entire drive, and then as soon as we drove into the driveway he immediately calmed and quickly fell asleep.  Apparently, huge public tantrums are exhausting.

At this point I had 45 minutes before a babysitter was coming so that I could go out and hang with some mom friends.   As I left my house just 45 minutes after the tantrum,  I entered an abyss of normalcy.  The moms talked about parenting, school, homework, PTA, and just other mom stuff.  There was no talk of tantrums, no mention of the challenges I had survived just mere hours before, it was as if I just became a typical mom hanging out with other mom friends.  It was relaxing, and rewarding to just chat about the simple things in life.

Then on Saturday I took 4 of Jacob's friends to a SUNY Albany football game.  It was Jacob's wish to have a day just with him, me and his friends.  He was insistent that David and Matthew not be with us, so that he could just have a special day.  During the 3 hour football game my emotions ran the gamut.......from gushing at Jacob and his friends, to sadness that I did not get the opportunity to have these moments with Matthew and David.  From giggling as I listened to 7 and 8 year olds chatter about everything from Justin Bieber to how many gallons of water are in the ocean, to longing for a time that I could share these moment with all of my boys and their friends.   I would give my right arm for Matthew to have one friend who we could take somewhere.  I would give anything for David to have a buddy to be with.  I know it would mean the world to each of them and it would offer that completeness for all of us.

There is something magical about joining a world of 7 and 8 year olds.  As a group these boys were a riot!  I don't think they really watched more than 3 minutes of the game, but in their own minds they could give you a play by play!  They spent the game racing each other, playing imaginary football, (I totally loved watching them do an imaginary kick off, and an imaginary complete pass, they were so in sync with each other that it was hard to believe they didn't have a real football in their hands.)  At one point they found another group of boys and they played a pick up game of football against them and then proceeded to challenge this older group of boys in all sorts of races and challenges.

 If you had seen me at any point throughout the night you would have seen the goofiest smile on my face.  This was a night of parenting that I had dreamed about.  This is what I dreamed of as I filled out my adoption application three times.  This is what I dreamed of when I wrote my "Dear Birthmom" letter, and this is what I dreamed of on the day that I adopted each of my boys.  I had always imagined that we would be "the fun house!" The house where the kids came to hang out, and the house where all the fun happened.

As we left the football game, the boys high fived the SUNY Albany players, and one by one the boys were handed football gloves that the players wore during the game.  As if the night had not been awesome enough, THIS was the icing on the cake!  This was the moment that made the night perfect!  Five little boys treasured these gloves like they were gold.  They retold the story of how they each got their gloves over and over again in the car.  They  marveled at how amazing it was that the players could just "give away their gloves".  To them the football gloves were the crowning glory on an already magical night, and to me it was like the  cherry on the top of a sundae.  It was the extra sweetness, the magical touch.  It was a bit of the magic that we could now take home and hang on to forever.


On the way home from the game we picked up Matthew and David, and I could feel my chariot turning back into a pumpkin.  I begged Matthew to just sit quietly in the car.  I let him sit in the front with the hope that he would just focus on me and let Jacob have his last few moments of awesome, but Matthew is Matthew, and impulse control is not something he excels at.  For Jacob and I we could feel our time in the "land of typical" slipping away.....Jacob explained to his friends what a respite worker is, and why Matthew had been with his respite worker while we were at the game.  He also explained why David was talking so fast........as Jacob put it, "there are 2 David's, one who is quiet, and one who is loud.  The loud David is there first in the morning, until he takes his medicine, then the quiet David comes, and then at night the loud David comes back.  Loud David is funny, but talks REALLY fast, he asks lots of questions, but doesn't listen too much.  Quiet David is calm, but also really quiet."

It was neat to hear Jacob's take on his brothers and to see him explain it all to his friends.  It was interesting to hear him talk about it in front of Matthew and David and they didn't seem phased by what he was saying at all.    For Jacob's friends, these explanations were just explanations....it didn't lead to other questions, it was simply statements of fact that were quickly accepted.  After dropping everyone off at their houses, we returned home and everyone went right to sleep.....except me......I spent time basking in the happiness of the night.  I wish I had more moments of typical, and easygoing, on the other hand, when I get those moments they have such an impact on me, so maybe it is good that they are infrequent, maybe it makes them more special.

Tonight I had the opportunity to do David's first ever long term homework project!  His assignment was to make a poster with facts all about the state of Florida!  Florida is David's favorite state because Disney World is in Florida.  Together he and I searched for all sorts of Florida facts.....the state flag, state tree, state bird.....you name it, and we researched it!

 I loved doing this simple project with David.  I loved getting a glimpse inside his academic world.  David is a hard worker.  He is inquisitive, and dedicated.  This project had a list of questions to answer, and he was determined to find the answer to each question.  I got to watch him type in the questions, and read through the answers.  We then worked together to write out all of the answers on the poster board.  Some of the words David was willing and eager to write, and other times he insisted that I do the writing.  While I know that this project was not exactly like doing it alongside a typical 5th grader, it was as close as I have come to having the parental experience of doing a project with my child.  I am so proud of the work  he did, and the effort he put into making his Florida poster!  I am so happy to have had what I hope is the first of many homework assignments to tackle with David, because even just this glimpse into normalcy was fun and was part of what I dreamed of as I ventured into the world of parenthood.

Childhood is made up of a combination of big moments and small moments, big successes and small successes.  I feel like this weekend I had lots of small moments that felt like huge successes!  I have alternated between loving each of these small moments and feeling angry because we don't get more of these small childhood moments in the life of my boys.  Even something as simple as a playdate is not simple for us.  For Jacob to have a playdate at our house, I have to ensure that Matthew is somewhere else because Matthew simply cannot tolerate Jacob having a friend over.

For many years I thought I would just work with Matthew and teach him how to behave when Jacob has a play date, but in reality, this is not a skill that Matthew is showing success with, and therefor for the sake of Jacob, his friend, and my sanity, we will simply plan play dates when Matthew is with his respite worker.

I will also continue to plan more big moments and small moments, and  I will try to remember that parenthood is a marathon not a sprint.  What I can hope is that when the boys are grown and we are sitting around a table together, they will each have enough small and big moment memories to look back on when they felt like they had enough of me and my love and attention.  As for me, I can hope that I can continue to get moments in the "land of typical parenting", but i will also try to remember all of the things that make parenting children with special needs memorable.  After all, just this week I got to celebrate David reaching out to hold my hand at CVS.  When you wait 10 years for this moment, it is extra special.....and all of the moms in "the land of typical parenting" likely won't get to celebrate a little moment quite as special as that was for me~!


Sunday, October 5, 2014

My mental health

There has been so much going on recently and it has been really hard to organize my thoughts.....with all that I share about my boys, it is only fair that I share about myself as well.  I am an adult who has struggled all her adult life with depression.  I have found a medication that changes my world.  I am one of the worlds best masqueraders, you would likely never know when, on the inside, I am falling apart.  Unfortunately, for the month of August, I was living a nightmare.  The pharmacy had made a mistake with my anti depressant and they had given me half of my regular dosage.  I was a mess.  It was all I could do to get to work, and get home and make dinner each night and get the boys to bed.  I was living life with tears bubbling up in my throat but was too ashamed to tell anyone.

Finally when it was time to renew my prescription, I went to the pharmacy, assuming that I was feeling this way due to them giving me a generic brand that didn't work, and in tears begged them please to give me a different brand.  An awesome pharmacist finally did some research and found out that I had been taking half of my regular dose for the past month.

Half of my regular dose was the difference between living in hell and living in happiness.  Half of my regular dose cost me a month of summer.  Half of my regular dose meant that i went through life, because as parents that is what we have to do, but there was a dark cloud covering every moment.   Half of my regular dose meant that I was short with my kids, it meant that I didn't have the strength or the patience to deal with every issue that came up.  It also meant that in many ways my boys were feeding off of my shortness.  It meant that they were living with a mom who didnt have all of the patience she needed to be her best.  It meant that I spent my nights with tears in my throat and no one to tell.

Half of my regular dose also explains my sobbing, true sobbing, when i picked up the boys from summer camp....you see, I am typically someone who might shed tears, but sobbing, is highly unusual.  I still can't get over all that David accomplished at camp, and the amazing fun Matthew had, but in rewatching the video, while it is awesome, sobbing now seems like an insane reaction!

What this has taught me is that I have to listen to my body.  I deserve to live in happiness, and my boys require that I live life at my best.  Given that, I have to check all medications that we are given from the pharmacy to make sure that they are correct, but I also need to listen to my body.  I will know now that when I can't get off the couch, or can't keep it together, that I need to be in contact with my Doctor.  Not only do my boys deserve the best me, but I deserve the best me, and thankfully, while I am person who is prone to depression, I am not a person living with depression.  I am a person who is thriving with depression that bubbles under the surface, when I don't have the support of all that modern medicine has to offer.

I have worried about writing this post for a few weeks now because we all know that impact of social media.  It is however I have decided, unfair of me to share so much of our story and yet hide this piece.  Some may say, having these 3 boys could make anyone struggle with depression, however I have struggled with depression since I was in high school.  I am one of the lucky ones, medications work for me and they have truly changed my life.


Monday, August 11, 2014

You never know where help will come from

Tonight is the night that Robin Williams passed away.  Actually, he didn't really pass away....the reports are saying he committed suicide.  Sadly, one of my first thoughts upon hearing of his suicide was "I wonder if this will bring attention to the mental health issues faced by so many in our country."  Sadly, I fear this will not be the case.  I fear that so many will miss Robin Williams, and for a few days we will hear of his loss, but over a few days it will become old news.

At this time, we are also seeing so many people dump buckets of ice water over their heads in support of research for ALS.  ALS is a debilitating disease, a horrible killer.  A disease that needs to be studied.  I wonder though, if the challenge was to dump ice water on your head in support of those studying mental illness would people do it?

I would like to think that we would see this an ice challenge in support of those afflicted with mental illness, but I can't say I am sure that we would really see this going viral.

Matthew is on edge recently.  I thought it was just me who was seeing it, and then a friend pointed it out at the pool.  He will never know how much him pointing it out helped me.  It is so isolating to be Matthew's mom.  To never know when he will blow up, and when things will be "no big deal" to Matthew.  On Sunday he was pacing at the pool, rather than swimming, and I was watching him and worrying, and then my friend shared his concern.  It was enough for me to know that my friend knows the "real matthew", he sees the "real Matthew" and he is there to support Matthew and me.

Tonight I dropped Jacob at football, and then I took David and Matthew to Walmart to shop for school supplies.  It was a quick trip and Matthew was thirsty and apparently the water fountain at Walmart was broken.  This was enough to have Matthew on edge, but he seemed to be coping as we busily looked for supplies.  When we were ready to pay we searched for a short line.  Matthew was getting more and more edgy, and more and more thirsty, and I just needed us to get out of the store.  Just when I thought it was my turn, a lady with a full cart came in front of us.  I almost said something, but decided we could wait.  Of course, I had Matthew with me, so he screamed out, "We were next, no budging!"

As I was reprimanding Matthew, the lady quickly shared that her daughter had been holding her spot, and that she was in line.  I was beyond thankful that she responded as she did, because so often Matthew is told by others that "it's ok".  It is not ok however to be rude to others.  It can lead to horrible, horrible situations.  If I don't teach Matthew this lesson now, I fear what will happen.  What fights will he get in?  Who will he upset?  What will the consequences be?

This woman was the perfect balance of factual- her daughter had been holding her place, and calm, so that I was able to redirect Matthew.  We actually ended up bonding over the fact that we were both doing some quick shopping while our kids were at football practice, and we were able to allow Matthew's  rudeness to blow over.  He apologized to her,and in her wisdom she said that she accepted his apology.  Again, she never said it was "ok", just that she accepted the apology.

I thought we were all set, and that Matthew truly understood that he had overreacted tonight at Walmart until his "swiss cheese brain" came into action tonight at bedtime.  He was mad because it was bed time.  He was mad because I was making him change his shirt, and he announced that he was mad at the stupid lady for budging.  All of the talking about how she WAS in line.  All of the talking about how no matter what, we are not rude to strangers.  All of the apologizing.....none of it mattered.  Even though he seemed to understand, once he was mad again tonight, his anger triggered his primal misunderstanding of tonights events.  He still does not completely understand why she was ahead of us, and why it was ok, and that he was wrong in being rude.

There is nothing I am going to say to him to make him see it the way the rest of us see it.  There is nothing I can do because his response is primal.  It is all emotion, and no thought.  It is all action, and no restraint.  it is likely going to be what does him in.  It is what I am working against at all cost, but it is saving someone from himself........that is life's biggest challenge.....

Sunday, July 27, 2014

Emotions

I am a true mastermind at hiding my emotions.  I can be feeling lower than low, and almost no one would know.  No matter how many times I hear things like, "these boys are lucky to have you", or " you do so much for your boys", the comments that reverberate in my head are things I have heard like "you shouldn't have adopted so many kids if you couldn't take care of them", or " all they need is more structure and discipline".

Recently, I have been feeling very much alone.  One of the things that struck me the other night after a rough bedtime, is that I have no one to "tag out" to.  There is no one here who I can really lean on and say, "they are yours, I am going to the grocery store", or "they are yours, I am going for a walk".  Sure, we have friends and we have grandparents, but no matter how amazing these people are, the buck stops with me.  They are mine.  I think for me that is the hardest thing.  The discipline is mine.  The good is mine.  The hard is mine. The bills are mine.  It is all mine.

That is truly exhausting.

I have a bill I am working on paying, and the organization that I owe suggested that I call someone for help.  While I am sure that I could make this phone call, that is simply not how I function.  I am a strong, independent person who believes that it is up to me to fulfill all of my personal responsibilities.  And the blessing is, that this is a bill I can pay and a bill I will pay.  The weakness is that this is a bill that I could pay with a few months of lead time.  It is not a bill I can pay right this moment.  For all people, or at least for most people I know, there are bills that are paid immediately- mortgage, credit cards, car payments, insurance, child care.  There are bills that are paid quickly- cable, electric, medical bills.  And there are bills that are paid as quickly as possible- memberships,dues and the other extras in life.

As a single mom, I am very fiscally responsible.  I have to be.  There is no one else who is going to take care of my bills.  There is no fairy who is paying for us to live.  I take great pride in this.  I take great pride in being the person who can take my kids out for a treat, and I take great pride in teaching my children, that every dollar has a value and if we spend a dollar in one place, we will not have it to spend somewhere else.  At times, this has led to some humorous interactions.  I was trying to teach Matthew the value of money and I explained it to him by telling him that my credit card allowed me to spend $100 every week, and that I could only spend the $100 once.  Unfortunately, he was listening and realized at the grocery store that I was trying to spend $110 on groceries and he panicked and screamed at me that I couldn't use my credit card....as my face turned red, I explained to the cashier that of course I could use the credit card, and I begged Matthew to please be quiet and told him I would explain more in the car.

The hardest thing for me is to ask for help or to admit that I am struggling.  As a teenager I struggled a lot with depression.  It was very hard to be a teenager who loved working with children and to have my ovaries removed and along with them my possibility for having my own children.  I thought that was the worst thing I would cope with.

Right now however, I am struggling with the fact that while I have children, I have children who are not allowing me the "typical" parenting experience.  Even with Jacob, I have to constantly monitor his development.  I made a choice to send Jacob to summer camp for the most of the summer rather than to send him to summer school.  I felt like he needed time to just be a kid, and his summer school was only a short 3 hours, 3 days per week, and I really didn't have any great child care options for him.  So I decided that this summer I would focus on him socially and choose camp over summer school.

Given this choice, he is receiving very minimal speech therapy.  I am now listening to him regress and struggle with speech all while hearing his friends communicate clearly.  He struggles with him/her, he struggles with before/after, and he struggles with other very basic concepts for an almost 2nd grader.When he is talking to me, I am struggling to understand him when I cannot see his mouth and get a sense of what he is trying to tell me.  I am sure that a lot of this will be worked on again come September in speech, and I am equally sure that most people are not noticing these changes, however I am his mom, and to me these changes are very visible.  Equally as visible to me are the missing play date opportunities, and the solo play Jacob participates in at camp.  It is hard to be at camp and to see your child sitting alone, and playing mostly alone.  I am sure that this is not how he is most  of the time, but when I see it, it hits hard.  I think Jacob is a child who enjoys a combination of solo play and peer interaction, but I am always concerned, because I am his mom, that he isn't keeping up or he isn't "fitting in".

Jacob is living a life unlike most of his peers.  His life may be more "typical" if he was being raised in an inner city, but for a child living in a calm suburb, Jacob's life is unique, making Jacob unique.  In many ways he is wise beyond his years, he has an understanding and a compassion for others that most 7 year olds do not.  He is compassionate towards David in ways that I am continually surprised by and proud of.  He welcomes Matthew back, even after Matthew has had a fit, in ways that sometimes I am not able to.  But, if Jacob was my only child with a disability, I could focus more on his needs, and we would be practicing speech and articulation, and maybe his delays would not be as obvious to me this summer.

I guess what I am trying to express in this post is the thoughts that are going on inside me all of the time.  This has been a rough summer for me, and yet if you saw me I would tell you "things are fine".  Because, in reality, there are so many people who are dealing with so much worse.  I am so lucky to have my 3 boys, and I know that.  However, that does not make it easy to raise these 3 boys.  Raising them is exhausting.  It is "on" all of the time.  Our respite has been ridiculously inconsistent, and even when I have respite, I still have 2 children who need me, so it isn't really "respite" for me.

 A friend saw me the other day, and I was opening up to her, because she "gets" it as another single mom, and as I was talking Jacob was whining, and she reminded me that my easy child, Jacob, would be someone else's challenge......that statement really put things in perspective.  My "easy" child is in a co-taught classroom, receiving speech, OT, and special education services daily.  My "easy" child has some significant needs, and yet he almost doesn't register to me as a child with special needs given my other 2 children.

I know that I cannot expect people to recognize my struggles if I don't verbalize them, and I am horrible at verbalizing them, and please know this blog post is not a "cry for help" or anything like that.  This blog post is more a "real glimpse into our world, into our every day."  It is my way of saying that everyday as a single parent, even with typical kids, would be really hard.  When you tag out and say to your partner, "you put the kids to bed, I'm going to the grocery store", remember how easy it is to grocery shop without kids in tow.  When you go out for a mom's night, remember how great it is to go out and not come home and pay the sitter.  This post is more about reminding people how hard it is to be a parent, any parent, and then an inside glimpse into my life as a single mom raising 3 children with special needs.

Sunday, July 6, 2014

My boy the Bar Mitzvah

WOW.......I know that all parents and families gush when their child becomes a Bar Mitzvah, and I am sure that I will feel David and Jacob have been incredible when they too reach the magical age of 13 and I celebrate with them at their Bar Mitzvot, but I believe that there is something truly magical about Matthew.
See, Matthew lives life in a magical way....whether you knew Matthew well or not, if you have talked to Matthew in the past year, you were likely invited to attend his Bar Mitzvah.  He was so excited, that he was oozing joy and wanted the world to celebrate alongside him.

No matter how many times I tried to explain to him that the world is not invited to anyone's BarMitzvah, I could not get him to contain his joy and allow me to create the guest list.  Similarly, even as late as the night of the Bar Mitzvah, he was asking people if they were attending his party.  Random people he didn't know, who simply had come to services on Friday night, were asked if they were coming to dinner and to celebrate.  Thankfully, the world did not take Matthew up on his offer to attend the party, but the chapel was significantly more full than I think most of us expected on July 4.  I was not sure if we would get most of my family to attend given that it was a Friday in July and a holiday weekend, and I was not at all positive that I would have as many friends as ended up coming because July 4 weekend is often a time that people go away.  I cannot imagine celebrating this occasion however without each and every person who was in that room because each person has been a part of Matthew's journey.

From our family who was there to greet Matthew within hours of him entering my world, to camp staff who met Matthew as soon as he was allowed to enter New York State, to teachers who worked with me and had no idea I was on the journey to adopt a son, but welcomed him with open arms.....the room was full of love.  In addition, all of the people who have cared for Matthew as therapists, respite workers, babysitters, and all of the friends who have stood by me and my parents on the journey of raising Matthew.....the room was simply full of love!

Matthew has always had a passion for Judaism.  He has always questioned where God was, and how he makes the world work.  He is a child who sang Jewish songs, but could not sing the ABC's.  He is a child who knew the Hebrew Alphabet before he could read even 3 letter words.  He is a child who has had fits and anger outbursts everywhere, but never, not once, at Temple.  It is as if Temple is Matthew's safe place.  It is his sanctuary.  As such, Matthew is the most pure Matthew, when he is studying Judaism or feeling the love of being Jewish.

Matthew set a high bar for himself as he planned how he would lead his Bar Mitzvah service.  I am blessed to be part of a Temple who is experienced and who allows each Bar Mitzvah to guide how much of the service they lead.  When Matthew was shown his options, he himself set the bar higher than I think most of us would have set it for him.  He wanted to read the Vahavta prayer, and so he was taught it.  I thought he should be taught to chant his Torah portion because he is so musical, but the Cantor told me that he has to read it BEFORE he can chant it, and so he learned to read it like all other students.

It wasn't until Thursday night at rehearsal that I saw that Matthew was going to truly read from the Torah.  I assumed that he would lay a piece of paper over the Torah and that he would read from this paper.  Instead, my son who struggles to read english, read from the Torah- a document that contains no vowels.  Imagine reading a foreign language.  Now imagine reading it with no vowels.  Now imagine reading it with no vowels after only practicing it this way a handful of times and in front of 150 people.  This is what Matthew did, and he did it with no errors!  I cried, my dad cried, the congregation cried.  It was truly a moment that sent shivers down my spine.

This child has lived life on the edge.  He has struggled.  He has climbed mountains most adults don't climb.  He struggles daily to learn.  He struggles daily to understand the rules of life, and yet he perseveres.  He succeeds!  He excels!  Sure, he had some Matthew moments during the service, but it wouldn't have been his service without them........upon being given the Challah, bread, after the prayer, he commented that "thankfully, NOW he could eat......"  Many times he responded out loud with quips and commentary, but it was funny and it was as only Matthew could be!  It was genuine and true and Matthew all the way through!

After the party, which was filled with more love than I ever knew existed, we came home and Matthew opened his presents and cards.  This was when for me I got to truly witness the miracle that was his Bar Mitzvah.  First, Matthew insisted on reading each and every card.  I am still not sure that he understands or appreciates the gifts he received, because to him the cards were so cherished.

As it was midnight, I would have happily rushed through the cards and gone back to them tomorrow, but he read each and every word.  What was incredible was to realize that most cards contained the same words and I got to witness his struggles.  This same child who had commanded the service and made it appear so effortless, struggled to read each and every card.  At the service he read words like "soverign", "advocate", and "kindle", but in each card the words "congratulations", "success" and "special" caused him to stumble.  This only proved to me the intense effort that had gone in from Matthew and his teachers to making his Bar Mitzvah the true success it was.

I am Matthew's mom.  For years I have wanted nothing more than for Matthew to have his moment.  We have had so many years when there was no one to invite to his birthday party.  When he has begged for a sleepover or for a friend.  We have had so many years of struggle.  Matthew needed a day to shine......Matthew has earned a day like he had on Friday for his Bar Mitzvah!  This day showed me all that matthew has to offer the world, and all of the people who's lives Matthew has touched!  There are not many Matthew Bloom's in this world!  he is one of the most generous, kind, caring people I know with a heart of gold.  He can be exhausting as I try to care for him and meet his needs, but he can also be hysterical!  Friday night was all about all of the amazingness that is Matthew!  Friday night Matthew shined!  It will be a day that I will never ever forget!  My boy is a Bar Mitzvah!  My boy is a Jewish Adult!  Few have worked as hard as he did to earn this honor!  Few have been more deserving!  My heart swells with pride, my eyes gleam with respect, my cup overflows with love!

Wednesday, June 25, 2014

Last day of school Oh boy OY boy

Today was one of those days that I had pictured in my mind as perfect, but I had forgotten that my real life children don't always allow my days to go as pictured.  This week the boys are having their last days of school and summer camp at my preschool is starting, and David has been participating in a bike camp program to learn how to ride a 2 wheeler......needless to say, for many families, one of these events would have been a lot to cope with, but to have all 3 going on at the same time, well, it has been sure to cause some stress.  Add on top of this that Matthew had a dentist appointment yesterday, and so David's respite worker didn't come, and I had a meeting to go to last night, and well, I guess I should have predicted the shit storm that was today......but of course, I didn't.

The day started off rocky.......David is changing schools next year, and while he is aware of this to some extent, I never know how aware or how much he understands.  I figured he would get up and get going today like it was any other day.  What I didn't realize is that he would be sad about it being the last day, and he would "tell me" he was sad by popping open 5 juice boxes all over the kitchen the minute I got in the shower.  I also didn't realize that when I reacted to the popped juice boxes with exasperation, that he would then start to sob and run away and throw every sock he owns all over his bedroom.

It was only at this point that Jacob had the presence of mind to ask David if he was sad that it was the last day of school, and that was enough for the flood gates to open.....unfortunately, this all happened at 8:16 and I had to be out of the house at 8:20, and David was still not dressed, and was now crying and I still had my hair to finish.......I did my best to give the "it's the last day of school mommy knows you are sad, but we have to get going" pep talk, with some amount of  pep, all while trying to get David dressed and willing Jacob to get on his shoes, while keeping my voice calm and steady as I put together my work to do list in my head and started to figure out what could wait until tomorrow....finally, at around 8:23 we ran out the door, and I dropped the kids to my mom, with me saying I love you to David 3 times, and him pointedly not saying it in return......oh well.........I figured I would make it up to him in the afternoon.

Then, I was set to leave work at 11:30 because matthew ended school at 11:15, but at 11:40 I was still at work, so as I ran out the door, I called the bus company to tell them I would be late and to just let matthew off the bus and to tell him to go inside and wait for me.  I told myself that the "last day of school photo" would have to wait, and drove home as fast as I could, making it home BEFORE the bus, somehow, with enough time to capture the picture, and to find out that Matthew had a rough day at school......of course.....his last day as well, and he too is changing schools, so of course it was rough because why would we end on a good note?

Then I rushed to the bus stop to get David and Jacob off of their buses, and totally forgot my camera, so I have no "last day of school photo" of either of them, and was greeted by a very happy David, but a miserable Jacob who "hates his last name" and had the worst day ever.......can you tell that my "I am so glad I took the afternoon off to spend it with my awesome kids", mood was beginning to sour?

From the moment all 3 kids were home it was a chorus of "what are we doings", which I answered at least 100 times with "we are taking David to bike camp and then we will see" because I had planned to take the boys to a Valleycats baseball game as an end of year surprise, but:
1.  each child was rough around the edges and I wasn't sure a baseball game made sense
2. it was supposed to storm and likely the game was going to be cancelled
and I knew if I promised a game and then it was cancelled all hell would break loose!

I then made the mistake of taking all 3 boys to bike camp......I have waited years for David to ride a bike on 2 wheels, but way more important than that, David has waited a year to learn to ride a bike, and today was the day he RODE, and as he was just getting up for his first ride on 2 wheels I was breaking up a fight over who's turn it was to play on my phone and I totally missed it......(yes, I posted a video on facebook, it was his second ride.....ok, I missed his FIRST ride....totally MISSED it!)

On the way home I told the kids we would head to the pool, but of course it started to downpour, so that plan had to change......finally we just came home, and amazingly enough that is when the magic of the last day of school happened!  David built an incredible train track, Matthew built his traffic light structure and Jacob drew a poster all about Smokey the Bear!  All 3 boys were happy, each doing the thing that they needed to do to cope with the fact that today was a day of change and change is uncomfortable.

We ended the day with a bedtime story and happiness, and I am doing the best to avoid looking at all of the facebook posts of "last day of school fun", and I am reminding myself that behind all of the pictures is likely a few stories of days like ours.........



Thursday, May 22, 2014

thoughts......

So many thoughts, but not really able to put together a full post, so here goes my random thoughts:

1.  To Jacob's psychologist- when I brought all 3 kids with me tonight, it was because it was the easiest thing for me to do , and I thought it would be good for you to meet the other 2 boys so you would know who Jacob is talking about.  What I did not expect to hear is "he looks more workable than I expected" in regards to matthew.  As a Psychologist don't you know that you can't really tell a lot about kids with special needs just by looking at them.

What I really didn't expect was Matthew's break down at the Psychologist office because we were having pasta for dinner.  While I appreciate that you decided to talk to Matthew rather than work with Jacob, here are my thoughts:
a.  Maybe asking how old Matthew is was not really helpful- yes he is 12, but he has an IQ of 57 so he acts more like a 4 year old.  He was behaving like a 3 year old........did shaming him make him calm down?

b.  Saying that "maybe I needed you to come home to help me" once Matthew was calm was a great way to pat yourself on the back, but what I know, that you do not, because you didn't ask, is that you appeased Matthew by giving him what he wanted.  You allowed him to negotiate to have cereal for dinner rather than pasta.  However, the rule in my house is what I cook is what is for dinner.  I am not a short order cook.  I believe in family dinners.  Matthew often kicks up a fuss about what I am cooking and then wants seconds and thirds.
When he sat down for his cereal he was miserable, he wanted pasta like the rest of us.  Totally predictable!  This is why I had not offered cereal.  He will now wake up very hungry in the morning which should make the morning wonderful.........

2.  I had Matthew's IEP meeting yesterday.  What I wanted was a commitment that he would be in a class with 4 students, 1 teacher and 2 aides and not change teachers over the course of the day.  What the school wanted was 6 students, 1 teacher, and 2 aides and who knows if he will change teachers over the course of the day.
What we ended up with: 4 students, 1 teacher, and 2 aides and who knows how many teachers he will have over the course of the day.

What surprised me is that the other adults in the room can't figure out:
1.  why I am stressed that I have to wait until August to find out about how many teachers Matthew will have over the course of the day.
2.  Why Matthew NEEDS 1 adult.  He NEEDS predictability and structure.  This cannot be achieved with 1 teacher for Math, 1 for English, 1 for science etc.  You would not give a 3 year old multiple teachers, therefore Matthew should not have multiple teachers either.
3.  When I asked about other options I was looked at like I had 3 heads.....I am supposed to now just sit back and relax and wait until the decisions are made in August......really?  OK, I am going to try.......but basically, I won't know:
                                      1. what school Matthew will be attending
                                       2. how many teachers he will have
                                       3.  where his school will be located
Yep you're right....no anxiety here......none at all........oh and by the way, none for Matthew either who just really needs to know whether he is going back to his school or not.  You see, he would like to know if he needs to say goodbye to people or not.....but I guess I will just help him wait til August, that won't cause any stress.

3.  I thought Matthew's IQ was 62, that was the last number I had.  In reality, it is 57.  Average is 100. It is beyond impossible to balance that he speaks so well, but processes so little.  His presentation does not match the reality that is Matthew's delays.  I have got to wrap my head around this, and alter my expectations.  Not that I will lower my expectations, because I expect him to always rise to be his best, BUT, often I think he can do things he can't and I have got to come to terms with his limitations in order to set him up for success.

4.  The teacher says he is testing at a 5th grade math level.   The other day we were buying milk for $3 and ketchup for  $0.89 .  When asked how much milk and ketchup would cost together he could not figure it out.  I asked the teacher how he is testing at a 5th grade math level.  her answer......the questions on the test were multiple choice, he is a good guesser.

Thank you for that information.......that is basically worthless.  I deal in realities.....in reality I need him to understand $3 plus $0.89 is $3.89.  How about we start there?



Saturday, May 3, 2014

David and I have the baseball blues

David only wants to play baseball on a "regular team".  He sees his brothers gear up for baseball twice a week, and today he decided he has had enough.  He is desperate to play!  He doesn't want to play on a special education team.  He doesn't want to be the manager.  He only wants to play and be "one of the guys".

To look into his eyes as he asked me over and over and over again ( because when David is stressed or upset he tends to repeat his sentences) why he can't play was a total mommy low moment.  There really is no answer that I can give him that will satisfy him.

"you can't play because you can't hit the ball, and just standing at home plate isn't safe as kids pitch to you?"     "you can't play because you don't understand the rules?"  Then again, how are you ever to understand the rules, if you can't play
"you can't play because at your age the kids don't use a T and the best chance you have is using a T, but you are too old to play with the T ball league"
"you can't play because there is some stupid dumb rule that says, you can't play unless you can play independently, and you can't do that yet because you need support to be successful"

I begged the league to let David play at Jacob's level.  He would be playing as a 10 year old with 5, 6 and 7 year olds, but that is the level he is at.  I was told he is too old.

I begged the league to put David on the 9/10 team, but that I would help him hold the bat and hit the ball and run with him. I was told that is unsafe.

He has been offered a hat to wear- but he doesnt' just want the hat.....he wants to PLAY!

I have offered him the option of playing in the special education league, but he wants to play with his brothers, at their field, with them.

I hate it when there aren't any answers.  When all I can do is look at his eyes and see his tears.  He asks for so, so little.  Truly, we should all be as happy as David is most of the time....he loves the simplest things in life.  But this want I can't make come true and it has my heart hurting.

I spoke to Jacob's coach today, and he is going to let David keep track of the runs and the outs in an "official" book, and David will have a hat and a t-shirt.  And for now, this will have to be the best I can offer to David.

However, it isn't good enough.  It isn't enough to make David's tears go away, and the lump in my throat go away.

I want to see David at bat.....David wants to be at bat.....and oh how I wish I could make that happen.

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.








Wednesday, February 5, 2014

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.)

Monday, January 27, 2014

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.

Thursday, January 9, 2014

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.