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~!