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!

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~!

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