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!

Saturday, May 25, 2013

A mom tantrum

This morning was not one of our best mornings.  Every night before I go to bed, I leave out 2 bowls of cereal, one for Matthew and one for David.  They are up at the crack of dawn and if I leave them out cereal they usually let me sleep until 7.  However, some mornings the cereal is not enough.  Today was one of those mornings.

Today Matthew ate both bowls of cereal, and apparently was still hungry.  In his apparently hungry state, he decided that it would be wise to eat a jar of tomato sauce.  A JAR of tomato sauce.  A LARGE JAR of tomato sauce.  The jar of tomato sauce that I was going to use for pasta tonight. 

Is this healthy? no.  Is this a crisis? no.  Did I react with any even a slight modicum of appropriate? NOPE!  See it was early....and it isn't like he ate it neatly and put it all away.....there was tomato sauce all over the kitchen.  What does a mom do when she walks downstairs to a kitchen covered in tomato sauce?  She throws the jar of course!  What happens when you throw a jar of tomato sauce?  The top comes off the container and sprays tomato sauce everywhere that there was not tomato sauce already.

What happens when a mom throws a jar of tomato sauce and makes a huge mess?  Often, this mom at least,  begins to yell like a crazy person.  Sure, I am the grown up.  Sure, I should know better than to throw things.  Sure, I have now made a mess....but in my angry state, common sense and understanding don't exist....so now I had to find a way to remind the boys why the kitchen covered in tomato sauce was their fault!

Jacob....you had me up all night because you were kicking me in the back and knocking me out of my bed so I am tired.
Matthew....you woke me up early down here banging around
David......yesterday you ate a ton of jelly so there was no jelly in the house.....(I am not sure how that connected to me being angry today, but I had to come up with something)

As I yelled and carried on, David looked at me and shared the saddest statement of his life to date.....in his quiet little voice he told me, "sometimes I don't like it here".  Six words that brought me back to reality.  Six words that I had to agree with.  Sometimes I don't like it here.  Sometimes I hate when our mornings start like this.  Sometimes I hate when our bedtimes end with fighting.  Sometimes I want it all to be happy all of the time, and I hate when we struggle.  Sometimes I have to remember what is important.  Tomato sauce is not important.  Tomato sauce all over the kitchen could actually have been funny, if I wasn't so busy overreacting.

To know David is to know that he is a boy of very few words.  These 6 words may have been the most important thing he ever said to me.  I am just so thankful that I was able to hear him and that I listened.  This was David telling me he needed more mommy time.  This was David telling me that he needs me.  This was David reminding me to stop sweating the small stuff.

In that moment I decided that I had to adjust my priorities.  David and I needed a date.  Sure, I had to go to work today, but I needed to make time for my boy.  I had to heal our rotten morning.  I decided that I would go to school and surprise him in the afternoon and take him on a date.  I called his teacher to let her know that I would be coming in and to make sure that I could spend the last 30 minutes of the day at school with David.  I also asked her to give him some TLC to make up for our crazy pasta sauce morning.

After school I had a chance to talk to David on our date.  I told him that I was so happy that he told me that he didn't alway like it at home.  I needed him to know that everyone feels that way sometimes.  I also told him that I was so happy that he had said that this morning. 

I told him that we would have more dates.  I told him that I knew that he needed that.  I know he needs quiet, and our house is far from quiet.  He needs to be 1:1 so that he can have time to talk, time to share and time to connect.  Our two hours together today did more than make up for our morning.  It gave me time to let David know that I was listening.  It gave me time to feel the love of David and to spend time just hearing him.  He picked out pancakes for dinner.  We wandered Walmart together.  We drove and listened to the radio and we just had time together.

Sure, pasta sauce all over the kitchen is a crappy way to start the morning, but I will take a kitchen covered in pasta sauce any day if it ends with me remembering what is important.  No child in this world can get too much 1:1 time with an adult they love.  Children in single parent homes especially can never get too much time alone with their mom or dad. My boys need time together as a family, they need time together just the three of them to play and laugh, and then they need time alone with me. 

I don't want another pasta sauce fiasco, and I hope that I learned my lesson today....the 6 words from David were huge, but they were the reminder I needed to slow down and focus on the important things in life, and to let David know that we can always fix things if we work together as a team.  The smile I got when I surprised him at school is just the reminder I needed that my boys are my world and sometimes you have to take time together to reconnect, to bond and to simply enjoy the quiet.

An amazing performance

With all that goes on in life, I sometimes forget to say that I am lucky.  I often feel it, and remember to count my blessings, but I don't always remember to say it out loud.  Here is the post that defines so many of the reasons I am lucky:
1.  My boys can all talk- if they are in pain, or happy or need something they can all tell me.  Even David, who has taken a long time to get to this point, I now know that if he is hungry or thirsty or needs something, he can let me know.
2.  My boys all have control of their bodies- so many children with CP or other disabilities are locked inside their bodies which they cannot completely control.  My boys struggle with motor skills, but they can all throw a ball, and control their gross and fine motor movements.
3.  My boys and I are supported by an amazing group of people, from family to friends and our community, we are loved and supported.  This is not the case for everyone who is raising children with special needs, but it makes our journey so much more full of joy.
4.  We share a lot of laughs at home together.  Sure, all families have struggles, but as long as there are giggles that seperate the struggles, then life is worth living.  The other night Matthew was cracking up and telling me that Jacob was being fresh......Matthew's giggle made me giggle and then we laughed together the pure laughter of a family.  The sound that makes the hard times easier.  The laughter that bonds you together.

On Thursday Matthew had a talent show at his school.  It was at this show that I was reminded that I am a lucky, lucky mom.  In his school there are approximately 55 children.  Each of these children struggles with developmental or behavioral challenges that are significant enough to require them to be in a class with only 4-6 other children.  Each of these classrooms has at least 3 if not 4 adult staff members.  These are children who face significant struggles.  Children who are not being instructed in their school districts because their needs are too significant.

As I looked around the room, the level of disabilities was intense- there were so many children who needed so much support and yet for these children it was talent show day.  It was their day to shine.  It was their day to sing, to tell jokes, to play musical instruments, it was their day.

The first child got up on stage and was playing a classical song on his violin.  It was amazing, my thought was that he must be a savant.  He appeared to have autism and yet his music was perfect.  He didnt miss a note.  When he finished my dad commented that it was the worlds smallest violin, and that you could hardly see his fingers move.  The boys father turned to my dad and with pride told him that it was a toy violin, his son pressed a button on the violin and it played the music!  For all of us in the audience, it didn't matter- the guts it took to get on stage, to stand in front of an audience, was amazing!  The presence of this child and his pride that he had played violin was phenomenal.  The fact that it was a toy violin did not take away from his moment in the spotlight, it made his moment more special.

From this boy, to the 2 boys who read jokes to the audience and made the audience laugh, to the boy who got on stage to dance and moved to the beat, to the girls who sang about butterflies each act was incredible.  For so many of these children, the success was simply in getting on stage.  The success was in doing something alone in front of an audience.  The success was in being in the spotlight.

Throughout the show what amazed me was that the entire school listened and appreciated each child's performance.  I have been to so many performances where the audience talks through the show, and you can hardly hear the person on stage.  I have seen parents and typical children ignore the person on stage.  To see this group of children cheer for each other, listen to each other, and respect each other was truly seeing an amazing support of community.  At this school the children all struggle, so no one is seen as different because they struggle.  Each child is cheered for their successes, rather than knocked down for their failures.

I will be forever grateful that I have a video of my son playing drums for a group of kids and adults who hooted and hollered when he was finished.  I will be forever grateful that Matthew's talent was showcased and that his teacher truly was in awe at his skill and cheered for him.  As I watch the adults in the video it reinforces for me that my son is loved, and cherished and treasured at his school.  Tears poured down my face as I watched Matthew shine in his moment.  It is one thing to know that your child is a talented musician, it is another to see other people amazed at your child's talent.

The Questar Boces program has given my son the gift of education, love and a feeling of success that is a right for all children.  For that I am forever grateful!

Friday, May 17, 2013

a complete stranger

Today I had a meeting with David's school team, the camp director of his summer program and a brain injury specialist.   The goal of the meeting was to figure out how to help David.  His school team saw an increase in negative behaviors in March and April and so we scheduled a meeting to see if the camp director and brain injury specialists had any thoughts as to what was going on and how we could best help David.

For good or bad, the brain injury specialist had lots of thoughts.  So many thoughts that were dead on, and yet were so hard to hear because as obvious as they were once he said them, the entire team and I had been missing them.

David has had an increase in behaviors for the past 2 years around his birthday in the end of January.  His team was thinking that this was due to his birthday and all that surrounds a birthday for a young child.  However, as the team described David, and as the camp director described our family life and the 3 boys, it became clear to the Dr that what we were seeing was David's response to the stress in his life.

David has always been an introverted child.  Even when he was very, very young, David internalized everything.  He shut down.  He was hard to access on a good day, and if there was stress involved he was even harder to access.  Often, especially over the last few years, there has been a lot of stress.  During the times of stress, I focus first on calming Matthew down, second on helping calm Jacob's fears and then I check on David.  In life, the squeaky wheel gets the grease.  David almost never, ever squeaks until he screams.  At home, it has been forever since David has squeaked.  Or maybe it has been forever since I have heard him.

As the Dr was talking about us needing to form connections with David and the teachers and I needing to set up time to form relationships with David and create a strong bond, my heart was breaking.  You see, David is so quiet, that after an outburst from Matthew or struggles with Matthew, I have learned to process with Jacob.  Jacob's crying, and words make it clear that he needs me and is nervous.  Jacob leans in for extra hugs.  He checks in with me.  I check in with him because he let's me know that he needs me.

After Matthew struggles, David is just as likely to go play blocks, or play on the IPAD or read a book.  I forget, because he doesn't say anything, that he has also been witness to the trauma.  That he is nervous or anxious and that he needs me to tell him it will all be ok.

When I took Jacob for therapy, I had David come with me 2 times because I thought he also could use a place to be a safe haven.  Both times David came, he was out of control- throwing toys around, and just bonkers.  I took this to mean that David wasn't ready for play therapy.  In reality, it likely meant that he wasn't ready, but that is because he doesn't have the tools, not because he doesn't need the help. 

David does not yet know, because of his brain issues, that the world is safe for him.  He doesn't completely trust that he can get his needs met by the grown ups around him.  He uses the out of control behavior as a way to ensure that his needs are met.  He did this as a toddler as well- when he felt unsafe, he would throw things, and knock things over and a grown up would eventually pick him up and take him to a quieter area.  When he was in a crowded place, he would act up so that I would put him on my shoulders and remove him from the chaos. 

Because of the chaos around David at home some times, and David's brain issues and processing delays, he often responds with a long delay between when things occur and his response to the situation.  Essentially, over the past few years Matthew has struggled in October and November, and been hospitalized at these times, and David has acted up in January.  By January, typically Matthew has been hospitalized, the chaos has calmed and Matthew has returned home.  This all in time for David to have processed all that occurred and to act up in response to the chaos.  His acting up is essentially his way of screaming, "what is going on!  I don't feel safe....I don't understand....help me". However, by the time he is responding, the rest of us are enjoying the calm after the storm.  I hadn't taken into consideration  David's slow processing time and the fact that he may just be processing what happened months before.

In addition to all of this, David relates very, very intensely to Jacob.  They have 2 beds in their room, but almost nightly they sleep together.  They almost never sit on the couch without David being on top of Jacob.  It seems almost as if David could crawl inside David, he would. 

Matthew almost nightly still antagonizes Jacob.  In some ways it is typical big brother stuff, but some nights it goes beyond that, and Matthew simply does not grasp when he is crossing the line between bugging Jacob and bullying Jacob.  The Dr today also said that as David watches all of this happen, it is raising his anxiety level and having a negative effect on David.  Again, while I hate to see Jacob "bullied" by Matthew, for Jacob and Matthew it is something that they are working on and something I am supporting them through.  While it is not good for Jacob, he seems to be coping with the stress and he and Matthew are forming  a bond.  Jacob also understands on a 6 year old level that his brother has limitations and he is aware that I am here to help keep him safe.    However, it had not occurred to me that for David this was having a negative reaction.  To watch his "safe person" be bullied is intense for David.  He is worrying for Jacob, and scared and unable to communicate all of his feelings. 

The goal, according to the brain injury specialist, is to build bridges and relationships with David.  I have to teach David that the world is safe and I have to start by teaching him that I am here to keep him safe.  We are going to spend time each night relating and just sharing space together- we will do puzzles, put together train tracks and do other activities that organize David.  He loves to put things together, doing this will organize his brain and by doing it together we will form a connection.  The hope is that as we strengthen our connection and as I help him to realize that he has to depend on the world around him to keep him safe that David will become less and less inside of himself and will become more open to the outside.  The goal is that eventually I will give David the language to share his feelings.

I cannot believe that it took a stranger to highlight for me the importance of strengthening my connection with David.  I know that David does not express his needs, or his wants.  Even as simple as asking for food or a glass of water, he still does not have these skills consistently.  How could I expect him to tell me he was sad, if he couldn't ask for water?

I know my bond with David is strong.  Our love for each other is strong.  However, he needs to learn to rely on me and to feel safe in me when he is scared.  I have to teach him that which most babies know....I have to show him that the adults are here and we will keep him safe.  I have to teach him the words to use, and how to attach those words to his emotions.  .  I would have said before today that I had it all under control.  I would have told you that we were in good shape.  I did not realize that I had a child screaming out without making a sound.  I didn't realize that his lack of language was as strong as the loudest scream.

I hear you David!  I am here and we will work and play together.  Your world is safe.  Mommy is here, and now I hear you!

Saturday, May 11, 2013

CSE meetings, an article in the paper and an update

This is a first for me......I have completed all 3 of the  CSE meetings for the boys, their IEP's are approved, and I did it all with no tears!  I am not sure that it ever really gets easier to know that your child, or in my case children, need educational support.  I know it never gets easier to see their test scores in black and white. 

This year the hardest score for me to see was David's score of 0.3 in mathematical operations (ie plus, minus etc...).  This means that David scored better than only 0.3 percent of all 9 year olds.  This is a hard pill to swallow, but it was made easier by his amazing team of teachers, therapists and other staff members.  They helped to remind me that David is not defined by this one number.  They reminded me that he is showing growth.  We laughed as we looked back at David's 3 years with this team.  We chuckled as they shared stories of him using his loud voice to ask for stuffed animals while inside a tunnel.  We celebrated that he counts to 50 now.  We celebrated that he can at times dribble a basketball.  We celebrated all of the fabulous that is David, and they wrote a document that shares the supports that he needs to be successful. 

Matthew's meeting was with his new teacher and his new school staff members.  It was also a meeting to celebrate.  Just months ago I was not sure that Matthew could continue living at home and I was spending my nights researching how to place your child in a residential placement setting for children with developmental disabilities and mental health issues.  Matthew still struggles with these issues, and I am aware that we are riding a roller coaster and on every good roller coaster there will be ups and downs.  However, he is in a very small class, often only 3 children, a teacher ,  3 aides and therapists coming in and out to work with children.  Often there are more adults than there are children, but this is the environment that keeps him calm and happy enough so that at home he can cope.  This is the environment where he has success.  This is the environment that allows me to be supported as Matthew's mom.

The teacher helps  me understand the amount  of support that  Matthew needs so that I can best support him at home.  We have a consistent behavior plan between school and home that helps tremendously.  That said, I also believe that Matthew is a child who just has normal ups and downs, and when he is up, life is good, and while it is not perfect, he is a child who is manageable.  Then there are times when Matthew is down, and we are struggling over everything and it is a constant challenge to keep him calm and to keep everyone else safe.  Right now, we are on the cusp of a downward spiral.  My hope is to avoid it, but even with maximum behavioral support we are walking  tight rope.

For Jacob, his team helped me to understand that he is growing and gaining skills, but it is at a slower pace than average and he again requires support, but he is moving forward gaining kindergarten skills.

Each year it is hard to not just have your child go on to the next grade in a typical fashion, but if we have to go through the special education department, I know that we are in the best district to get the needs of my boys met.  The care and dedication from the teachers and the special education staff is amazing.

Today my family was featured in an article in the local newspaper.  The article does a wonderful job telling my family's story.  It takes you through the adoption process, and introduces the boys and their struggles, and talks about our successes and the fact that to me my boys are incredible gifts.

I truly believe that adopted children find the home that they belong in.  For some children it is a long, winding path to find their forever family, but each child finds their family in their own time.  My children found me.  We were meant to be together.  I am just enough of a pig headed person that I will fight to the death for my boys, however, I also recognize that there are limits to all systems.  I will always ensure that my boys are loved and cared for by those with them.  I will always make my boys be their best- their diagnosis do not allow them to get away with poor behavior.  Their diagnosis do not define them, their diagnosis challenge them, and offer my family struggles, but it is in how we deal with these struggles that we find success!

My goal when I first was asked to do this article was to bring attention to the fact that there is not enough support for families in crisis.  I was sad when the article took a turn, and instead the focus became more about me as a mom raising my boys.  I believe that any information about my family will show people that there are families who are struggling and that there is more that needs to be done, however, I think it is important to remind people that we have waited in crisis for over 3 weeks for a bed for Matthew in a Psychiatric hospital.  We have waited because the beds were full of other children in crisis.  We have waited while he tantrummed daily.  We have waited, me unsure that we were safe and Jacob emotionally in crisis from fear.  We have waited as I watched Matthew plummet into the darkness of mental illness.  We have waited because the system is broken. 

As you share the story of my family, please remember that the most important  reason I share is because I hope to make a change.  As I have blogged, many families have reached out asking for anonymity but telling their story that is so much like mine.  A child with mental illness, a family with no where to turn.  A family though afraid of being judged if they share their story.  We would never judge a child with diabetes, or a parent of a child with cancer.  We need to offer parents of children wth mental illness the gift of not being judged.  We need to offer them the gift of love and support.  Mental illness is invisible but it brings great pain and sadness to families that it touches.  It can often no be cured, but certainly hiding or denying that it exists does not in anway way make it easier to get help for other children and families.

Together, we can get help and make a change for children and families who are struggling. Together, we can get rid of the stigma of mental illness.  Together we can help children be emotionally safe!

Monday, May 6, 2013

Jacobs timeline

First and foremost, I have to say that I love Jacob's kindergarten teachers.  I am not sure that there are actually any better teachers on the entire planet!  They have made kindergarten so much fun for him.  They have challenged him, supported him, helped him grow, and built his self esteem.  This post is about my feelings.  It is about my emotional response to our life situation, not their assignment, which as an educator I completely understand.

Jacob's final family project this year is a timeline assignment.  He has to put together a time line of his life in pictures.  Unfortunately, Jacob's  timeline is complex.  Jacob was first adopted by another family and he lived with them for 2 months.  My boys are all very well aware of their family stories as I have always told them their life stories.  That said, there is no way for me to explain to Jacob why his first family decided to put him back up for adoption.

Jacob's initial bloodwork came back that he might have sickle cell anemia and the first adoptive family was not sure that they could handle all that could go along with having a child with sickle cell anemia.  When I heard that a family was being sought for a little boy with the possibility of having sickle cell anemia, I did a little research and decided that he was the little guy that was meant to be added to my family.  I knew that whether the additional bloodwork showed that he had sickle cell or it showed that he didn't, either way we would be ok, and he was meant to be with us.

Matthew was 5 and a half when I adopted Jacob and he and David came with me to meet David.  He met Jacob's first adoptive mom and over the years has asked questions about her.  Like all adopted children, Jacob, Matthew and David ask if they grew in my tummy.  They then ask me to tell them about the story of their adoption and who's tummy they grew in.  As I was telling the story to Jacob earlier this year, Matthew asked if he grew in the lady's tummy that he met.  I have decided to be truthful at all cost about their story, and so I explained that no, Jacob did not grow in her tummy and that he grew in a mommy's tummy in Indiana.

At this point, Jacob wanted to see pictures of the 2 "moms" and he wanted more clarification.  Thankfully, his first adoptive mom had shared pictures with me of when they met him in the hospital and over his first 2 months of life, so I had pictures to share and show him.

Now, my dilemna is this....the question posed is to create a timeline of your life.  The first picture is to be the day you arrived.....is this the day Jacob was born?  Is it the day I met him?  Is it the pictures from his first adoptive family?  Is it the first picture of the 4 of us?

Do I ask Jacob what picture he wants to use?  Do I give him a choice of the pictures from before he was even in our family?  For Matthew and David, there were very few days between when they were born and when I adopted them.  For the two of them, I know which pictures we would use.  For Jacob though, there are two months to account for.  Two months when he was in this world and I didn't know him.  Two months without me.  Two months to account for in his lifeline.

I will likely just show him a baby picture and that is what we will use, unless he asks for a picture of him as a newborn baby.  He is the kind of child who may ask for a picture from his "first mom" when we read the assignment together.  I will follow his lead on this assignment.  I will allow him to be the guide.

The stories of my boys are their stories, I am here to be the guide and to fill in the missing pieces, but the stories are theirs.  He will share this story from his timeline with his class. I want him to share the story he is comfortable with.  His teachers this year have supported him as he told his class about his brother's disabilities.  They have supported him as he felt different because he is black in a mostly white class.  They have supported him as he celebrated Chanukah and most of the class celebrates Christmas.  They will support him as he does his timeline project.

For some reason tonight, this assignment hurt my heart.  I know there will be more assignments like this in our future.  My hope is that we will have these assignments to do for other equally loving, dedicated, caring teachers.  With an awesome teaching team, Jacob will be proud of his entire story.  And as we tell his story, and he gets comfortable, I too will continue to feel comfortable with his life story.....after all, had he not been adopted by the first couple, he would never have found his way to me!