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, January 25, 2015

David turns 11

David just turned 11.  He is an amazing, sweet, loving little boy, but he is far from what most kids are like at the age of 11.  David is an 11 year old who is still not toilet trained.  He is entering puberty, and yet developmentally in most ways he is still cognitively, emotionally and developmentally a 4 or 5 year old.

David is working on basic concepts like 1:1 correspondence- he still struggles with counting items past 7.  
David is able to read, but not often able to tell you what he read without prompting.
David is able to know enough  to be aware that he needs to use the toilet, but either not able to recognize the need to go, or not aware of when he is going.  Instead of asking for help however, something many 2 and 3 year olds will do, David has recently started hiding his pullups that have poop or hiding his soiled underwear.  We talk about the reasons this is not a good idea.  I implore David that when he has an accident I am not mad, I just want to help him clean up, and yet this weekend I have found 3 pairs of soiled underwear or dirty pullups in David's bedroom.

I know in many ways it is hard for parents when their children have a disability that is visible.  That said, I often wonder how life would be different if David and Matthew looked more disabled.  It took me until Wednesday night to shop for David''s birthday presents, not because I wasn't excited for his birthday, but because his list hasn't changed in 7 years.   For David's birthday, we bought him a train set and a 1000 piece puzzle.  We bought him Mickey Mouse Duct tape, Sponge Bob duct tape and a cook book.   He is still in the phase where he loves Mickey Mouse, Brio trains, and stuffed animals.  Most 11 year olds are into sports, or science, or chapter books, so it was hard to emotionally ready myself this year to once again shop in the preschool department.  For some reason, this year it was harder than in years past.

The decision has been made that David will be staying in 5th grade next year.  He has an awesome teacher, an amazing team and is in a fabulous classroom.  That said, his buddies from preschool are all moving on to middle school.  David is not ready for middle school.  I know this.  However, I have been David's mom for 11 years.  After 11 years, including 6 in Elementary School,kindergarten-5th grade, he is supposed to go on to Middle School.  My friends will be touring Middle School this summer with their kids.  There will be school dances, parties and other life experiences that I thought we would be a part of, and we won't.  David won't notice.  This decision is good for David.  It just is hard for me.  Essentially this is a precursor for me to go through as there are more and more phases of life when my friends children are entering independence, and we are still functioning at a younger level.

In many ways this younger level is great- he still snuggles with me, watches Mickey Mouse, and goes to bed at 7:30.  However, my hopes and dreams for him; to play a sport, learn chess, win the spelling bee, and more have all had to be altered.  I have had to readjust, and most of the time, I have done so, with little problems.  I love David's youthful innocence.  I love his childhood passions.  I love that he still sleeps with 2 Mickey Mouse stuffed animals.  That said, I would love to see what he would be like as a typical 11 year old.  Would he be the star catcher on his team?  A track athlete?  Would he be in theatre?  Would he love the arts?  Who would he be if his DNA had come together as it was supposed to?  Who would he be if he didn't have the duplication on his 15th chromosome?

I know at the core he would be lovable, gentle, kind, and sweet- he is all these things already.  But the other pieces of his puzzle, will remain unknown at least for now.

Saturday, January 10, 2015

signs that I am doing it right

Sometimes as a parent we hear our child say things just as we say them and we moan...."ugh, he sounds JUST like ME!" and we wish that we were doing things differently.  As a mom, especially with Jacob, I have a lot of those moments.

 Today he and David were carrying a toy to the basement and Jacob started to scream, "hurry up David, help me NOW, I mean NOW, I need help" and he sounded just like I had sounded a few weeks ago as I was building the boys some furniture.  Sure, I could have been nicer, and I could have used a quieter voice, but as the piece was tipping and I needed help....well, that is just how things came out!

Today, as the boys were carrying toys, and Jacob was dropping his.....well, as he put it, " that's just how it came out....I needed help in a hurry!"

Last night however, I saw my favorite side of Jacob....we were at Temple for Camp Shabbat, and David was "off".  He was throwing his napkin on the floor, dropping crayons, and just looked "off". I was hoping he would be excited to be at Camp Shabbat because a staff member from his sleep away camp was going to be there and they would be singing camp songs.  I was hoping it would bring up good feelings for David, and he would be excited.

I'm still not sure what David was thinking or feeling, but my heart swelled as Jacob supported David through his struggle.  Jacob is amazing with David.  He often puts David's needs ahead of his own in order to ensure that David is happy.  Last night, as Jacob saw David was struggling, he started asking him questions:
"Are you happy?"- no answer
"Are you sad?"- no answer
"Do you miss camp?"- no answer
"Are you afraid you are going to have to go back to camp?"- no answer, but a long look at Jacob- our first hint....there is some worry about camp- Jacob immediately catches this and continues questioning
"Are you afraid you have to go to camp tomorrow?"- no answer
"Do you miss me when you are at camp?"- David's eyes fill with tears
"Do you miss David, Mommy, Jacob time when you are at camp?"- tears fall down
"It's ok, it's not time for camp.  We can figure it out.  Do you want this magnet?"

Immediately, a smile comes across David's face, and Shabbat peace resumes.  Jacob has figured it out, through kind, calm questions, and David never even said a word, yet Jacob has solved his worries.

Tonight we were at Staples getting our computer fixed and Staples is Jacob's favorite store!  He immediately ran off to go look for a new pen or folder, or something that he HAD to have for his art desk.  As he was looking, David found a folder that he wanted.  Without missing a beat, Jacob came over to tell me that he had 50 cents, but David really wanted a folder and a pen and they both cost 50 cents, but he wanted to be the one to buy them for David.  He was willing to not get himself a folder, so that he could buy David what David wanted.  

All of this making David happy, is done with such a calm, purpose, and with such joy for Jacob, that it makes my heart swell.  I hope that I can say that while Jacob may at times model my shortness, and my exasperation, that he also models my kindness and my patience!  I hope that a part of this comes from me......cause it sure makes me proud!

Sunday, January 4, 2015

December Vacation

We are at the end of December Vacation and it has been a long two weeks.  This has been potentially one of the most challenging vacation weeks we have had as a family for many years.

For David, I believe, he is loving his classroom so much, and the routine and structure, that vacation for him creates a challenge.  He is a child who thrives on routine, loves his new classroom, and therefore the unstructured days of vacation are a challenge.  He started vacation with many challenging days full of intensity but unable to express what he was feeling.
It is so hard for me as David's mom because I know he is feeling things, and I know that he hates to be defiant and I think it scares him when he is out of control, however I still need to respond to it and set limits for him so that he learns.  No matter how much you are missing school, or how unsure you are of your schedule for the day, it is not ok to scratch me and to yell at me and to throw things.  That said, when David is yelling and screaming, it is a more obvious scream for help.  He calms when I hold him close.  He calms when I whisper and he calms when i finally hit on what it is that is bothering him.

I am often unsure when it comes to parenting David.  It is hard to set limits when you don't know that the child understands.  It is hard to rationalize with a child who struggles to communicate.  It is hard to look at his eyes that are filled with sadness and know that he has a want or a need or to tell you something but that he is unable to communicate.  Luckily, once David's rage is over and his need is met, he quickly goes back to a calm space and he can be engaged in a puzzle, playing with trains or often some other quiet activity.  Given time, David will reconnect and makes amends once he finds calm and is back to feeling comfortable.
After a rough first week David seemed to settle into vacation mode, and has done relatively well since New Years Eve.

Matthew has had a rocky break as well.  He has had some great moments, we had a date that went well, and he has enjoyed some great time with friends.  However, many of his comments are scary and he has had multiple outbursts that leave the family shaken.  There is no way for me to know which of Matthew's comments are made for effect, and which are made because if it is in Matthew's head, it is said out loud.  That said, comments about pushing people over railings, and killing people are never funny and are never things I can take lightly.  I don't know what to do with these comments, except to tell Matthew over and over again what is socially appropriate, how he can better express himself and remind him of the consequences of poor choices.

He has been quick to anger over silly things- a slow car driving in front of us, creates  a panic for Matthew.  Someone looking at him, becomes a reason for him to yell.  Me taking "too long" to get ready, becomes a fight.  With Matthew you have to have a daily plan because empty time is reason for tantrums, however any plan that we have is talked about so many times that the fun is sucked right out of the plan.

For example, Matthew was supposed to go out to eat with friends of ours on Sunday and I told him about it on Saturday.  Every single time we saw each other, he had to make a comment about going out to eat.  Where are we going?  When?  Who is going?  What time?  How many people?  It becomes too much talk, and the fun is sucked right out of the activity.

On Saturday Matthew got upset because he drank almost an entire bottle of orange juice and so i told him that he simply could not buy an iced tea with his respite worker.  I wasn't upset about the orange juice, I simply set a limit that he had enough "junk" for the day. Unfortunately, this limit sent Matthew into a tail spin and he raged at me.  He ran at me and pushed me into the counter in the kitchen, he threw a massage toy at me, and he punched me in the back.  All the while, I spoke calmly to him and reiterated the rule.  I needed him to know that I wasn't upset, and i wasn't punishing him, he simply had already had enough "junk drinks" for the day.

Once his rage was over, he was over it....unfortunately, the impact of Jacob seeing Matthew push me was a catalyst for him to fall apart.  The entire evening was spent with Jacob in hysterics because he was afraid.  Once again, I don't know how "afraid" Jacob was, vs how tired Jacob was from vacation.  Jacob kept saying that I didn't call for help, but I was trying to explain to him that I didn't need to call for help because Matthew's respite worker was there, so we all just had to leave the house and could go along with our day.  Unfortunately, Jacob's own ability to either understand all of this, or make sense of it was a mess, and so he ended the day with an  hour long tantrum.

It isn't easy to be Jacob.  He has his own learning challenges that he is just becoming more aware of , coupled with a desire to be a helper to others, and often I fear that Jacob may crumble under the pressure he puts on himself.  Jacob is expressing a lot of anxiety tonight over going back to school tomorrow and I cant tell if it is because of some social issues at school, concern over school work, or him just not being ready to be back on schedule and routine.

If you had asked me when i adopted these three guys what I thought parenthood would look like, I would have never guessed it would look like it does.  I envisioned a constant stream of friends over.  Hours of watching movies together and family card games.  In reality, friends over is not typically a reality because of Matthew's unpredicatable nature.  Jacob, David and I love movies and need to watch more of them together- it is the perfect time for snuggling, and in place of family card games, we have started to do family puzzles.

Not quite the family I envisioned in my plans, and this was certainly not the vacation I had pictured, that said, if I look back over the 2 weeks we had time at the trampoline park, did 2 puzzles, each that had 1000 pieces, took on 2 new family volunteer projects, spent time with friends, and weathered the storms of our life.  Not our best December break, but honestly, not our worst either.