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!

Thursday, June 28, 2012

the balancing act of meeting each child's needs and setting limits

All 3 of my boys are attending a typical day camp this week.  With this there has been a lot of joy- especially for Jacob, this week of camp has been a week of growth- he is loving the songs they are singing, he is gaining independence, and he has so many stories to tell me each night it is amazing!

For David, I was realistic, if he makes it at camp all week it will be something huge to celebrate.  David's energy and abilities fluctuate all day every day.  On one end, David is a calm observer who loves to watch what is going on and quietly participate.  However, when overwhelmed or over excited, the best description of Davis is the Tazmanian Devil.  He can destroy a room in under a minute!  His energy is unmatched and he doesn't respond well to redirection or limit setting when he is busy being Tazmanian Devil like.

I hoped for David that he would enjoy being surrounded by those in a Jewish camp program, that he would enjoy the songs, the art experiences, and would smile and laugh each day.  I knew that it was likely that there would be times that David would struggle, and I expected that I would hear from the camp at some point that David was struggling and that camp was too much for David.  It is now Thursday night, and while I heard from camp today it was because David got overheated and had seizures.  His counselors seem to have really tapped into who David is, and have understood the importance of balancing David's time with the group with some down time.  His senior counselor has truly bonded with David and greets him with enthusiasm each day.  Camp has been more than I could have asked for this week for David and we will end the week knowing we have had success!

For Matthew, the hardest part is that the things he struggles with always border on "typical kid stuff" but there is always that extra social element that matthew does not understand.  It has been a hard week for me trying to balance allowing Matthew to simply be a kid, and holding him to the standard that I think is important.

I have always believed that for every time that Matthew gets away with breaking a rule or doing an inappropriate behavior it is a set back for him.  Matthew takes 100 times longer to learn and follow rules than your average child.  It is work to teach him all of the parts of social interaction.  Given all that goes into me teaching Matthew the rules of social etiquette, I stress to everyone with him what we are working on and how important it is to set limits for Matthew.

Before camp started, I was clear with his counselor that it was important to set boundaries for Matthew on the first day- no hugging of other kids should be allowed, language needed to be appropriate and all rules should be stated clearly.  On the first day of camp Matthew came home and told me that he had taken his shirt off and was laughing- not a major transgression, but if Matthew is allowed to take his shirt off at an inappropriate time, and it is seen as acceptable, he will take his shirt off again, and it may be less appropriate.  He has tried to take his shirt off in the mall before, at  a party, and at a wedding.  Therefor, my response is always quick and clear- shirts stay on unless you are swimming. This was not a major transgression, but was my first cause for concern that the staff was not understanding the importance of limit setting. 

As the first night of camp went on, Matthew shared that he talked to someone's friend on their cell phone, that he was hugging the kids, and that he kissed a counselor.  Again I reiterated to Matthew our basic family rules- no talking to people we don't know, and our bodies stay to ourselves and we do not hug and kiss others who are not family members.  In the morning I shared with the counselor what Matthew had told me, and asked that she please ensure that he is supervised because given his cognitive limitations, Matthew is not like other 10 year olds.  The counselor shared how cute it was that matthew liked a girl, and had a crush but promised to stay on top of it. I completely understand that the staff at any camp is young, and that is often what makes camp so wonderful  It is a wonderful aspect of the camp the boys are attending, as the energy level of the staff is unmatched!  However, the weakness is that there is a limit of life experience, and especially when dealing with children with special needs, this presents problems.

Tonight was the overnight for Matthew's age group at camp, and I have torn myself apart trying to figure out what to do.  Was Matthew appropriate for an overnight?  Would it be good for him?  Would it be good for the rest of the group if he stayed over?  Would he be able to handle an overnight?  After much struggling, I decided that the best choice was a compromise- Matthew could stay late at camp until 8:30 and then I would pick him up.  This gave him the opportunity to participate in the fun of a sleepover, but he would sleep at home thereby giving him supervision and everyone else some "non matthew time". 

When David, Jacob and I went to pick up Matthew, I was so happy with my decision, as it gave me an inside peak into camp.  First and foremost, Jacob is essentially a little "camp mascot" greeted by all of the staff and older kids.  He shined, and loved the limelight.  David was greeted warmly by many staff, and was also greeted by some of the older children.  He loved the attention, and it was great to see him shine.

We arrived at Talent Show time, and Matthew had talents to share!  It was awesome to hear him sing with the music director and to see the campers and staff sing along with him.  It was even more amazing to see him play the camp drum set and watch the staff look at him with awe and amazement as they realized what an incredible talent he has as a drummer.  I also enjoyed seeing the children relate to Matthew.  They offered support and kindness and at times I could see that he was frustrating them.  As the kids were sitting watching the talent show, Matthew was up and moving constantly.  As the other children understood that one act each was the rule of thumb, Matthew was happy to have his own personal talent show singing song after song.

The children were kind but it was obvious to me that Matthew's limitations were clear to the kids.  It was fabulous to see how much kindness the children showed to Matthew, and after he played the drums, it was an amazing mom moment to see the children clap and cheer as they supported his natural drumming ability!

I think I made the right call by having Matthew attend the overnight until 8:30.  I will always be happy that I got to see Matthew at the Talent Show, and it was great to see camp in action.  My concerns about Matthew as a camper were validated as I watched the effort he required for the staff, but I had not given the camp enough credit for how dedicated they were to all of my children.  The staff each showed such care towards Matthew, David and Jacob.  The spirit  of the counselors was incredible and they were a fabulous team of young people.

I am so thankful that my boys have had an opportunity to attend a typical camp program- there is no other experience like it in the world.  I will always have to work on giving Matthew space to be a kid, balanced with ensuring that limits are set so that he continues to learn all of the skills that he lacks.  For tonight though, he left the overnight as the boy who plays drums amazingly well, and to me that is reason to celebrate!

Sunday, June 17, 2012

It Takes a Village

Since I have been looking for a new school for Matthew, I have been focusing on what I expect from a teacher and a school for him, and I have had to answer the question "what am I looking for in the next classroom for Matthew."  As I struggle to put my thoughts into words, I have been able to determine that what I am looking for is somewhere that Matthew can learn the skills that he needs to be a functional member of society.

A few weeks ago we went to the grocery store and as we went up and down the aisles, Matthew stopped us every few minutes to talk to people.  He was gathering information from strangers and accquantances alike about what was in their grocery carts and what everyone was having for dinner.  No matter how often I tried to steer Matthew back on track to us getting our shopping done, he kept stopping and talking to people.  Each person reacted so warmly to Matthew, because he is so engaging and endearing when you just run into him and he asks you his questions.  However, when you are with him for a period of time, it quickly becomes apparent that his question asking is not endearing, it actually makes him vulnerable, and as he gets older it is more and more apparent that this behavior has to stop.

We spent time practicing at home how you greet people and who you should greet when you are out doing errands- not an easy thing to teach at all.  Imagine having to explain why when we are on a walk, I will nod and say hi to people we walk by in the neighborhood, but it is inappropriate to go from saying "hi" to asking all kinds of questions.  I also had to explain that sometimes I will talk to people, who I may not know, but that it is different for me to do this than it is for him to do this.  There are no hard and fast rules about how we communicate as a society, these are things we learn through daily experiences, however Matthew is not learning these skills, and so I am working to teach him them.

Tonight alone, Matthew received some computer games from one neighbor and a jacket, because he had chatted with her recently, and she thought he would like these things that she was getting rid of.  He had an offer of leftover pizza from another neighbor simply because he said the pizza smelled great and commented on how much he LOVES pizza.    He tried to stop to ask a neighbor to play catch, while the neighbor was mowing his lawn and was appalled when I told him this wasn't appropraite because of course the neighbor "loves" to play catch with him!

As we rode our bikes by another family, I reminded Matthew that the rules are that he is not to talk to them, or stare at them as he rides by, but rather he is to ride his bike by so that they can go back to their game of catch.  No sooner had Matthew ridden by this family, then he said loudly, "Mom, I did it!  I didnt stare or talk to them".  Let me say, this was equally as humiliating as when he stops and talks to people, and asks about their eating habits!

It is one of the hardest things I have to do to teach him appropriate habits of human interaction.  These are skills that humans learn through observing those around them.  Unfortunately, matthew is not learning these skills through oberservation, and even worse, he is being reinforced for his inappropriate interactions each and every time people give him things, or offer him some of their pizza simply because it smells good.

I often think that Matthew got the worst combination of disabilities possible.  He is amazingly verbal, but doesn't know how to have an appropriate conversation.  He is engaging with others, but often inappropriately so.  He is endearing and caring about everyone around him, but often because he doesn't separate his caring for others between those he knows and those he doesn't know, he creates situations where he is vulnerable to be taken advantage of.

I am recommitting to working with him to learn the skills necessary to be an appropriate, active participant in society.  I am committing to doing this with patience, love and gentleness to try to help Matthew remain his endearing nature, but conbining that with teaching him who to talk to, when and what topics are appropriate.  I am asking you to please help me in this process.  If Matthew is chatting with you and the topic is inappropriate, let him know and guide him towards an appropriate topic.  It takes a village to raise any child, to raise a child with special needs takes a very special village, but Matthew is filled with love and kindness and I want him to be a successful part of life and to do this he first has to learn to interact appropriately with those he comes in contact with.

Friday, June 8, 2012

pre k graduate

I will never forget the day that I met Matthew, and started my family!  My parents and I went to pick him up from the adoption agency, and as we drove away I had many thoughts:
1.  I had always dreamed that my first son would be named Seth, so I named Matthew Seth, but he didn't look like a Seth, so I had to figure out what his name would be.

2.  I dreamed of the day he would be Bar Mitzvah at Temple Gates of Heaven- since we moved to Delmar, this will not happen, he will be Bar Mitzvah at Beth Emeth, but on his first few hours with me, I dreamed about this wonderful day with my son.

3.  I dreamed that Matthew would graduate from my Nursery School and would dance to the song New York, New York.  One of our pre-k classes does a very cute graduation ceremony each year, and it blends with my personality! After I saw it for the first time, I just envisioned my child graduating from this class.  Well, Matthew needed a special preschool, and so he did not graduate from my school, and the opportunity for New York, New York was missed.  Then I had hopes that this dream would come true for David, but while he graduated from my school, he was in a different class, and he ended up having seizures on the day of his graduation, so while the day was very emotional for me, since he was leaving my school having grown so much, it was not the day I had envisioned.

Today, my dream came true!  I got to be a mom in Lynne and Judy's room, and got to watch my son dance to New York, New York!  He sang the Boa constricter song, he sang about animal crackers, and he danced.  He got his diploma from my Nursery School, and I cried!  This dream has been 11 years in the making, and to have it come true was incredible.

Jacob makes so many of my parenting dreams come true!  He has been turned on to Tae Kwon Do by one of the teachers at my school, and now takes karate 3 times a week and is loving it! 

He has friends, and loves playing with other kids his own age, and I envision playdates, sleepovers and other fabulous rites of passage as Jacob continues to grow up!

When you wait 11 years for a dream to come true, the dream is just that much more amazing!  Today was my day to see my baby graduate, and it was truly so very special!