Lucky.....not a word I often think of when I think of our lives. But Lucky is the only word I have for this weekend. Lucky for so many reasons!
1. Jacob and I seem to have moved on from our adoption talks and he seems to be at peace. His adoption binder is back in the drawer and he no longer wants to sleep with it each night.
2. Jacob has asked that I make sure to keep his binder safe, but we had the opportunity to talk again about his adoption at midnight on Friday night when it was just him and I and we were snuggling together. This is the best way to talk about life's worries- maybe not the best time, but certainly while snuggling makes the talk considerably safer.
3. I had the chance to scrapbook with friends this weekend and I used that time to work on each of the boys adoption books. While going through Matthew's book I found pictures I had forgotten I had of Matthew's birth mom, and I found the letters she wrote to me. I had forgotten how beautiful her words were, and how much faith she had in me. I had forgotten the love she had when she placed him for adoption and gave me the gift of motherhood. Upon finding her letters I felt like I had been punched in the gut- had I let her down? Did I keep my part of the deal? Would she be proud of me as his mom? Adoption means that you are caring for the hopes and dreams of another parent. It is quite a responsibility, and finding her letters reminded me of my promises to her upon Matthew's adoption.
4. Jacob had a fabulous playdate with an old friend from preschool, and on Saturday David and I had the day together. As a single mom with 3 boys, time alone with one child is rare. To have time with David is an amazing gift. You get to hear what he is thinking and what he feels. It was among my best 3 hours in the past month. I always say that I have to find more time to give each of my boys alone time, and again I am recommitting to this promise.
5. Today Matthew had a playdate. He is 11 years old and hasn't had a playdate in 7 years. That is a long time for a child to go without an invitation to play with another child. Watching Matthew and his friend I felt like I had been given a parenting gift. It was awesome to watch Matthew negotiate the intricacies of socializing with a friend, and heart warming to watch his friend spend time with our family.
We went to the YMCA to swim and then went on a hike and the day passed with happiness and ease. My wish for years was for Matthew to have a friend! My wish has come true! It was all that I wanted and more to see him happy and playing with a peer!
6. I feel like we are part of a great community again. With my boys, and I think also in part due to who I am as a person, a feeling of belonging comes and goes for me. Today I was reminded that we are part of a wonderful community. I will never be a person with a huge number of friends, but I am a person who is blessed to have a community of supporters and people who want to see my family succeed! For that I am so lucky.
Sunday, October 14, 2012
Wednesday, October 10, 2012
the stuff they don't teach you in adoption class 101
I have always had books about people of different skin colors in our house. As the caucasian mom to 3 children of African American decent, I knew it was important to have skin color be an open topic. From the time Matthew could sit for a book, I remember reading him the book Brown Sugar Babies! The book has beautiful pictures of babies of all different shades of skin color. I thought that with books like this and an open forum, we would be smooth sailing through a lot of adoption issues that surrounded race.
Over the past year or so it became obvious that no matter how many books we read, skin color was going to play a role in our family dynamic. Jacob spoke frequently about not liking his brown skin. It doesn't help that he has bad eczema and so we are often talking about his skin and his sores. It is not a far cry to go from my skin hurts to "I wish I had different skin"! Each time the topic came up we would stop and look at all that makes his skin beautiful and how all 4 of us have different skin color and how beautiful each color is.
Monday night David picked out the book "The Color of Us" for us to read at bedtime. It is a great book about a child going for a walk through her neighborhood and noticing all of the different skin tones that make up the people of the neighborhood. There is a page with hands of all different colors and Jacob immediately started to try to find the picture of the hand that most closely matched his own. In turn Matthew, David and I also did the same.
As we were looking at our hands, Jacob asked me to tell him the story of his birthmother. I have always been open with the boys about their birth stories and so I went ahead and told him his story as I would usually do. Jacob was placed for adoption by a birthmom and was initially adopted by 2 women who live in Conneticut. After receiving Jacob's intitial newborn bloodwork back, there was concern that Jacob had sickle cell anemia. Jacob's adoptive parents did not feel prepared to care for a sick baby. They lovingly looked for a new adoptive family, and I was beyond ecstatic to welcome Jacob to ours! David, Matthew and I met with Jacob's first adoptive family at my Aunt and Uncle's house and in December 2006, during Hanukah, Jacob joined our family.
On Monday night, as Jacob asked more questions, I got out my bin of all of the adoption paperwork so that I could show him his adoption certificate. In the box was all of my paperwork, from the notes I made when I was first called about each of the boys, to the signed forms formalizing their adoption.
When I showed Jacob his adoption certificate, he begged me to let him sleep with them that night. I tried to show him that the adoption certificate is special and therfor not really something to be slept with, but he was persistent. He finally agreed to go to bed under the condition that I formally put his adoption information into his own book, and that I make him a copy of his adoption certificate that is for sleeping with.
I thought when he woke up in the morning and there was no further discussion of adoption that Jacob had moved forward. I patted myself on the back for a job well done, and moved on to the next family dilemna.
Tonight, as we were driving home from Temple, Jacob hit me between the eyes with some more powerful questions. Hard hitting questions. The kinds of questions that one can only ask in the dark as you are driving. As the parent you are thankful to have the road to focus on as you answer, and as the child you are thankful to be able to ask these questions without having to look at your mom eye to eye.
It started innocently enough with a statement, "my mom told me that if you are sick you should get some water then run around and then you will feel better." And then it tumbled into a long list of questions:
" when you adopt someone, it is supposed to be forever, why wasn't it forever"
"can I meet my birthmom?" "why do I have to wait until I am 18 to meet her?"
"why am I in this family?" "why didn't they want me forever?" "can I write to her?" "can I talk to her?"
I answered as best as I could. Taking the time to think, but not too much time that he would fear he had upset me. Pausing to be thoughtful, but answering with certainty so he knew I was being truthful.
Upon arriving home Jacob hurried to get on his pajamas and immediately met me with a piece of paper. He was ready to write and needed me to be his scribe. Before writing, I took out his adoption binder, hoping that by showing this to him he would feel secure, ( and maybe I could distract him from the letter he seemed intent on writing). We looked at his foot prints that were taken in the hospital. We read through the description of the page that talks about his birthmom- I said how she was tall, 5 feet 9 inches, and we laughed about the fact that she had allergies as he sniffled.
I paused for a few moments and then decided that I had to complete the story for him. I had to show him the 1 picture I have from his first adoptive family. I have no pictures for him of his birth mom, but I do have one picture of his brothers from his first adoptive family. He studied that picture silently, taking it in.
Then he slowly picked up his pencil and started to draw- one person, "is this tall enough? you said my mom was tall". Another person, "what was the boy in the pictures name? Can you write it?". Then ever so slowly, he drew himself. He asked me to label each person, one was Jacob, one was his first adoptive mom and the other was his first adoptive brother. He then had me write the following, "Dear , I love you, you are the best. I cannot wait to see you. I love you forever, and I want to see you soon. I have a joke for you I will tell you when I see you. I think you are funny, I will see you soon, with a joke. From Jacob"
He then tenderly took the paper, looked it over, and put it in the front of his adoption binder, "for when I am ready". He then grabbed the whole binder, put it under his arm, and turned it over. On the back was a banana sticker. He rubbed the sticker and asked me to take it off, saying "I know she loved bananas, even without the sticker".
We went upstairs and I tucked him in, reminding him to be careful of the binder.
I came back down, and reminded myself that the binder is his. It tells his story, it is the connection he has to his past, and together he and I will find our way through the story of Jacob. I am here to guide him and fill in whatever pieces I can. He is the leader as we walk down this path. My heart is in his hand, and he struggles through making sense of the adult concept of adoption, which often doesn't even make sense to adults.
Over the past year or so it became obvious that no matter how many books we read, skin color was going to play a role in our family dynamic. Jacob spoke frequently about not liking his brown skin. It doesn't help that he has bad eczema and so we are often talking about his skin and his sores. It is not a far cry to go from my skin hurts to "I wish I had different skin"! Each time the topic came up we would stop and look at all that makes his skin beautiful and how all 4 of us have different skin color and how beautiful each color is.
Monday night David picked out the book "The Color of Us" for us to read at bedtime. It is a great book about a child going for a walk through her neighborhood and noticing all of the different skin tones that make up the people of the neighborhood. There is a page with hands of all different colors and Jacob immediately started to try to find the picture of the hand that most closely matched his own. In turn Matthew, David and I also did the same.
As we were looking at our hands, Jacob asked me to tell him the story of his birthmother. I have always been open with the boys about their birth stories and so I went ahead and told him his story as I would usually do. Jacob was placed for adoption by a birthmom and was initially adopted by 2 women who live in Conneticut. After receiving Jacob's intitial newborn bloodwork back, there was concern that Jacob had sickle cell anemia. Jacob's adoptive parents did not feel prepared to care for a sick baby. They lovingly looked for a new adoptive family, and I was beyond ecstatic to welcome Jacob to ours! David, Matthew and I met with Jacob's first adoptive family at my Aunt and Uncle's house and in December 2006, during Hanukah, Jacob joined our family.
On Monday night, as Jacob asked more questions, I got out my bin of all of the adoption paperwork so that I could show him his adoption certificate. In the box was all of my paperwork, from the notes I made when I was first called about each of the boys, to the signed forms formalizing their adoption.
When I showed Jacob his adoption certificate, he begged me to let him sleep with them that night. I tried to show him that the adoption certificate is special and therfor not really something to be slept with, but he was persistent. He finally agreed to go to bed under the condition that I formally put his adoption information into his own book, and that I make him a copy of his adoption certificate that is for sleeping with.
I thought when he woke up in the morning and there was no further discussion of adoption that Jacob had moved forward. I patted myself on the back for a job well done, and moved on to the next family dilemna.
Tonight, as we were driving home from Temple, Jacob hit me between the eyes with some more powerful questions. Hard hitting questions. The kinds of questions that one can only ask in the dark as you are driving. As the parent you are thankful to have the road to focus on as you answer, and as the child you are thankful to be able to ask these questions without having to look at your mom eye to eye.
It started innocently enough with a statement, "my mom told me that if you are sick you should get some water then run around and then you will feel better." And then it tumbled into a long list of questions:
" when you adopt someone, it is supposed to be forever, why wasn't it forever"
"can I meet my birthmom?" "why do I have to wait until I am 18 to meet her?"
"why am I in this family?" "why didn't they want me forever?" "can I write to her?" "can I talk to her?"
I answered as best as I could. Taking the time to think, but not too much time that he would fear he had upset me. Pausing to be thoughtful, but answering with certainty so he knew I was being truthful.
Upon arriving home Jacob hurried to get on his pajamas and immediately met me with a piece of paper. He was ready to write and needed me to be his scribe. Before writing, I took out his adoption binder, hoping that by showing this to him he would feel secure, ( and maybe I could distract him from the letter he seemed intent on writing). We looked at his foot prints that were taken in the hospital. We read through the description of the page that talks about his birthmom- I said how she was tall, 5 feet 9 inches, and we laughed about the fact that she had allergies as he sniffled.
I paused for a few moments and then decided that I had to complete the story for him. I had to show him the 1 picture I have from his first adoptive family. I have no pictures for him of his birth mom, but I do have one picture of his brothers from his first adoptive family. He studied that picture silently, taking it in.
Then he slowly picked up his pencil and started to draw- one person, "is this tall enough? you said my mom was tall". Another person, "what was the boy in the pictures name? Can you write it?". Then ever so slowly, he drew himself. He asked me to label each person, one was Jacob, one was his first adoptive mom and the other was his first adoptive brother. He then had me write the following, "Dear , I love you, you are the best. I cannot wait to see you. I love you forever, and I want to see you soon. I have a joke for you I will tell you when I see you. I think you are funny, I will see you soon, with a joke. From Jacob"
He then tenderly took the paper, looked it over, and put it in the front of his adoption binder, "for when I am ready". He then grabbed the whole binder, put it under his arm, and turned it over. On the back was a banana sticker. He rubbed the sticker and asked me to take it off, saying "I know she loved bananas, even without the sticker".
We went upstairs and I tucked him in, reminding him to be careful of the binder.
I came back down, and reminded myself that the binder is his. It tells his story, it is the connection he has to his past, and together he and I will find our way through the story of Jacob. I am here to guide him and fill in whatever pieces I can. He is the leader as we walk down this path. My heart is in his hand, and he struggles through making sense of the adult concept of adoption, which often doesn't even make sense to adults.
Thursday, September 20, 2012
The case of the missing alarm clock
I am a night owl, up until at least 12:30 or 1:00 AM each day. No matter how tired I am at 10 pm, even if I go up to bed, I get a second wind around 10:15 and I am raring to go until 12:30 or 1. Given my late night hours, you can imagine that getting up in the morning is not at all easy for me. For this reason I panicked when I decided that Matthew would go to school in a town 30 minutes from our house this year. I knew this meant that if we overslept and he missed the bus I would have to drive him to school, get the other kids to school and there would be no way for me to do all of that and get myself to work on time.
My plan to ensure we were on time was that I would set 3 alarm clocks each night- one in my bedroom, one in Matthew's bedroom and I would have my phone alarm set to ring. Each of these alarms would be set to ring at different times, and to make the most obnoxious sounds that they could so as to ensure that I woke up.
This plan worked amazingly well for over 2 weeks. We were up in time, ready and dressed to make the bus! Lunches were packed, bags were packed, all was good!
Until today!
Today I woke up and my clock said 8:03, the bus comes at 8:01. I ran out of my bedroom and noticed all 3 boys were sleeping ( it should be noted that this has not happened on a weekend in FOREVER!). I ran downstairs shrieking to Matthew to get up and get dressed, I hoped that as I ran downstairs the bus would be there and it would wait for him as he hurried to get clothes on. No such luck, the bus was gone.
As I hurried to jump in the shower, I decided I should give the bus company a quick call, maybe they were only a minute or 2 away and could come back. Maybe they would take pity on me and understand how hard it would be to take him the 30 minutes and back. Maybe just maybe, they too would understand that sometimes the alarm ( or 2 or 3) don't go off.
Thankfully, the bus agreed to meet me at the local high school, and so we proceeded to rush like crazy- pack the lunch, get Matthew his medicine, run out the door- all 3 kids in the car! Race like mad to the high school.
Of course we get no further than the end of the driveway before I realize that I am still in my pajamas! There is no time to go back inside and change, but if you know me at all, you know I NEVER, EVER, EVER leave the house in my pajamas! I never leave the house without a bra! Never, let me repeat EVER!
Needless to say, we drove fast to the high school, met the bus and rushed back home. As we pulled into the driveway I realized I had 18 minutes----exactly 18 minutes!!! to get Jacob and David out the door to their bus stop. In that time I had to pack 2 more lunches, get Jacob breakfast, get their socks and shoes on, and pack their backpacks. As the boys are moving the speed of paint drying, I quickly realized I had 2 choices. I could shower and drive them each to school, which won't work because they don't go to the same school, or again leave the house in my pajamas- have I mentioned that I never leave the house in pajamas? Have I mentioned that at the bus stop where the boys go there are other people? Have I mentioned that I hate when ANYONE sees me in my pajamas?
We again get everything done, we pile into the car and Jacob announces "mom, you are in your PAJAMAS"! Does he think I forgot? He suggests that I put on Matthew's robe which is blue and covered, and I mean covered, in sports symbols- can I just say it would totally clash with my pink jammies!
We drive to the bus stop where I have to get out of the car and walk the kids across the street.....total, complete embarrassment- I ask the mom, who must notice my jammies, if I can leave the boys and go home and shower- thankfully she says "yes"! I hug and kiss the boys and jog off to take my much needed shower!
Thankfully by 8:55 I am out of my jammies and by 9:10 I am at work! I have now fixed the malfunctioning clock in my room, reset Matthew's clock and turned back on my phone alarm which I turned off the wrong way on Wednesday.
Here's hoping to more calm and relaxation tomorrow morning, and that No one, and I mean NO one, sees me in my jammies!
My plan to ensure we were on time was that I would set 3 alarm clocks each night- one in my bedroom, one in Matthew's bedroom and I would have my phone alarm set to ring. Each of these alarms would be set to ring at different times, and to make the most obnoxious sounds that they could so as to ensure that I woke up.
This plan worked amazingly well for over 2 weeks. We were up in time, ready and dressed to make the bus! Lunches were packed, bags were packed, all was good!
Until today!
Today I woke up and my clock said 8:03, the bus comes at 8:01. I ran out of my bedroom and noticed all 3 boys were sleeping ( it should be noted that this has not happened on a weekend in FOREVER!). I ran downstairs shrieking to Matthew to get up and get dressed, I hoped that as I ran downstairs the bus would be there and it would wait for him as he hurried to get clothes on. No such luck, the bus was gone.
As I hurried to jump in the shower, I decided I should give the bus company a quick call, maybe they were only a minute or 2 away and could come back. Maybe they would take pity on me and understand how hard it would be to take him the 30 minutes and back. Maybe just maybe, they too would understand that sometimes the alarm ( or 2 or 3) don't go off.
Thankfully, the bus agreed to meet me at the local high school, and so we proceeded to rush like crazy- pack the lunch, get Matthew his medicine, run out the door- all 3 kids in the car! Race like mad to the high school.
Of course we get no further than the end of the driveway before I realize that I am still in my pajamas! There is no time to go back inside and change, but if you know me at all, you know I NEVER, EVER, EVER leave the house in my pajamas! I never leave the house without a bra! Never, let me repeat EVER!
Needless to say, we drove fast to the high school, met the bus and rushed back home. As we pulled into the driveway I realized I had 18 minutes----exactly 18 minutes!!! to get Jacob and David out the door to their bus stop. In that time I had to pack 2 more lunches, get Jacob breakfast, get their socks and shoes on, and pack their backpacks. As the boys are moving the speed of paint drying, I quickly realized I had 2 choices. I could shower and drive them each to school, which won't work because they don't go to the same school, or again leave the house in my pajamas- have I mentioned that I never leave the house in pajamas? Have I mentioned that at the bus stop where the boys go there are other people? Have I mentioned that I hate when ANYONE sees me in my pajamas?
We again get everything done, we pile into the car and Jacob announces "mom, you are in your PAJAMAS"! Does he think I forgot? He suggests that I put on Matthew's robe which is blue and covered, and I mean covered, in sports symbols- can I just say it would totally clash with my pink jammies!
We drive to the bus stop where I have to get out of the car and walk the kids across the street.....total, complete embarrassment- I ask the mom, who must notice my jammies, if I can leave the boys and go home and shower- thankfully she says "yes"! I hug and kiss the boys and jog off to take my much needed shower!
Thankfully by 8:55 I am out of my jammies and by 9:10 I am at work! I have now fixed the malfunctioning clock in my room, reset Matthew's clock and turned back on my phone alarm which I turned off the wrong way on Wednesday.
Here's hoping to more calm and relaxation tomorrow morning, and that No one, and I mean NO one, sees me in my jammies!
Sunday, September 2, 2012
success
Life is all about finding success.....the moments of success are happy moments. They are the moments that often come between the humdrum of regular life and at times they are the moments that come in between our failures.
At the end of August, it was time to drop Matthew off at Camp Chazak, a week long sleep away camp for children with special needs. David, Jacob and I then began our 6 day adventure, just the 3 of us. Camp Chazak occurs the second to last week in August, which is the week after most camps in New York have ended. Since I run a summer camp program, this is also the week I am on vacation. I had no real firm plans for David, Jacob and I , but I knew that this would be a week for us to recharge our batteries, and relax after a busy summer.
After dropping Matthew off at camp, the three of us headed to Yankee Candle Company in Deerfield MA. This is a fabulous place where children can explore, make their own candles, and tour through a candy store and a toy store full of little toy figures, games, puzzles and more. It was as we stood in line to make candles that I realized how quiet it was. David and Jacob each had a chance to figure out what kind of candle they wanted to make, then after making candles, we wandered for 2 hours through the store. We had time to look around, to touch, to smell, and to check out the cool toys. We explored the different scents of the candles, we checked out the candy store, and we just were. We were together enjoying a quiet day, enjoying our time together in a new place.
As we got in the car to head home, there weren't any questions of what is next, what's for dinner, where are we going? There was no urgency to get on to the next thing. We drove, I laughed as David rocked out to the hard rock songs on the radio. I giggled with Jacob as he checked out his new toy. We drove. At one point we stopped for ice cream at a homemade ice cream store somewhere between Deerfield and home. The boys watched ice cream be made. We shared a taste of each other's ice cream. There was no arguing over who got what size ice cream. There was only excitement that we were doing something special, and enjoying our special day together.
The second day together we had a playdate at a local state park. Again, it was the quiet that struck me. Quiet does not mean that things are perfect- there is still some whining, after all I am raising children, not perfect humans. There is still some fighting, especially in the morning and at night when little people are tired. But the overall feeling of the day is one of happiness, of contentment, and of ease.
I have come to realize that if I am quiet, I will hear the most important things from Jacob and David. When I ask questions, I get "yes" or "no" answers, but when I am quiet, Jacob especially will start to talk. On the third day as we were driving, Jacob asked if he was big enough for his head rest to be put on his car seat. It had been taken off when he was still in a baby seat during a car seat check a few years ago, but now he is older and I said it would make sense and we could put it back on. Jacob is a thinker, so I assumed that he had been thinking about it and just wanted his seat to look the same as mine.
When we got home, Jacob remembered wanting the head rest put on his seat and made sure that I got it down from the garage and he put it on his car seat himself. The next day as we got in the car, Jacob asked if I knew why he had wanted the headrest put on. I said no, and thought he would just be more comfortable. He said no, he was tired of Matthew touching his head in the car, and that this headrest might help Matthew stop.
As usual with Jacob, I was amazed at his thoughtfulness in thinking through the problem. Most of the time we are in the car Matthew does something to bother Jacob, often he touches his head. David has always rubbed Jacob's head as a way to comfort himself , he has done this since Jacob was a tiny baby. Jacob has always accepted this, and seems to know intuitively that this simple act calms David.
I am sure that Matthew wants to rub Jacob's head to "fit in", and not out of cruelty, however, Jacob has asked Matthew to stop this behavior multiple, multiple times, and he refuses to stop. Jacob's desire to put a physical barrier between himself and Matthew was such wonderful problem solving and showed so much thought. His ability to talk to me about this and to let me know that this is something he thinks about what important.
Throughout the 3 more days that Matthew was at camp, there were many times that Jacob would point out that it was quiet, or nice in our family, or as he would say, a good family of 3. I know that Jacob struggles with his emotions surrounding his feelings for Matthew. After all, Matthew is Jacob's older brother, and like any little brother, Jacob does look up to Matthew. However, Jacob also is realizing that having Matthew in our family at times presents challenges. Life is louder, more unpredictable, often repetitive and at times explosive when Matthew is with us.
During my second week of vacation, after Matthew had come home from Camp Chazak, I had the option of sending Matthew back to another camp he had attended this summer or having him with us for family activities. I knew that I wanted some family days, but I also knew that it was important for all of us that we have some more of these quieter days. We had been invited to go tubing on Wednesday with one of our family friends. Tubing is a fabulous activity- you ride down the river on a tube, you go as fast or as slow as the river takes you. Part of the time is spent chatting and laughing and being together, and part of the time is spent just enjoying the scene around you. I made the tough decision that David, Jacob and I would go tubing and Matthew would go to camp. I hated that it didn't make sense for him to come, but I also hated the idea of having him with us creating a different feeling to the day. My mom offered to take Matthew to dinner at night so that Matthew also had something special to look forward to, and this seemed to appease Matthew.
David, Jacob and our friends had a fabulous day on the river! We tubed for over 5.5 hours, we stopped to throw rocks, to catch crayfish and to splash around in the water. We giggled as we raced our tubes down the water and laughed as I repeatedly got stuck in the trees. Everyone got along, everyone was happy, and the day was rejuvenating.
Later in the week it was time for our annual trip to Moreau state park with other friends. Again I knew that with Matthew the day would have a different feel. Not a good or bad feel, but it would be different. With Matthew I would have been on guard all day- checking to see who he was talking to, playing with, and what he was doing. Without Matthew, I knew all would get along more easily, and that the play would be more cooperative. I knew the kids would all play together, build together and enjoy each other's company. There was a birthday party at camp complete with cupcakes, so it was an easy sell for Matthew to go to camp.
Again, as we were together at the Lake it was obvious that there is a feeling of relaxation. Sure David was goofy on the way up to the Lake, and he proclaimed himself crazy. On the way home there was some fighting over video games, but it was really kid stuff. With Matthew it goes to the next level and there is a non stop nature to the action.
Today as we prepare to end summer we spent the day at the town pool. This time Matthew came with us, and we had a fantastic day. The pool is somewhere that Matthew thrives. He lives for the diving board! The sensory input calms his body- he can jump off the diving board for hours upon hours and is completely at peace. When he came over to the little pool he played very happily, and got to be in the big brother role as he swam around Jacob and they played together. After being at the pool we drove to my parents house for dinner and Jacob and Matthew sat together in the back laughing as brothers laugh. They were singing and just being goofy.
Today was a day of success! I think for our family success is going to be best defined by time spent all together but punctuated with time spent apart. It is ok for me to decide that some activities are best when Matthew is with us, and other activities are best when Matthew is with another adult doing something that he loves. Family isn't about being together 100% of the time, but it is about enjoy your time when you are together!
At the end of August, it was time to drop Matthew off at Camp Chazak, a week long sleep away camp for children with special needs. David, Jacob and I then began our 6 day adventure, just the 3 of us. Camp Chazak occurs the second to last week in August, which is the week after most camps in New York have ended. Since I run a summer camp program, this is also the week I am on vacation. I had no real firm plans for David, Jacob and I , but I knew that this would be a week for us to recharge our batteries, and relax after a busy summer.
After dropping Matthew off at camp, the three of us headed to Yankee Candle Company in Deerfield MA. This is a fabulous place where children can explore, make their own candles, and tour through a candy store and a toy store full of little toy figures, games, puzzles and more. It was as we stood in line to make candles that I realized how quiet it was. David and Jacob each had a chance to figure out what kind of candle they wanted to make, then after making candles, we wandered for 2 hours through the store. We had time to look around, to touch, to smell, and to check out the cool toys. We explored the different scents of the candles, we checked out the candy store, and we just were. We were together enjoying a quiet day, enjoying our time together in a new place.
As we got in the car to head home, there weren't any questions of what is next, what's for dinner, where are we going? There was no urgency to get on to the next thing. We drove, I laughed as David rocked out to the hard rock songs on the radio. I giggled with Jacob as he checked out his new toy. We drove. At one point we stopped for ice cream at a homemade ice cream store somewhere between Deerfield and home. The boys watched ice cream be made. We shared a taste of each other's ice cream. There was no arguing over who got what size ice cream. There was only excitement that we were doing something special, and enjoying our special day together.
The second day together we had a playdate at a local state park. Again, it was the quiet that struck me. Quiet does not mean that things are perfect- there is still some whining, after all I am raising children, not perfect humans. There is still some fighting, especially in the morning and at night when little people are tired. But the overall feeling of the day is one of happiness, of contentment, and of ease.
I have come to realize that if I am quiet, I will hear the most important things from Jacob and David. When I ask questions, I get "yes" or "no" answers, but when I am quiet, Jacob especially will start to talk. On the third day as we were driving, Jacob asked if he was big enough for his head rest to be put on his car seat. It had been taken off when he was still in a baby seat during a car seat check a few years ago, but now he is older and I said it would make sense and we could put it back on. Jacob is a thinker, so I assumed that he had been thinking about it and just wanted his seat to look the same as mine.
When we got home, Jacob remembered wanting the head rest put on his seat and made sure that I got it down from the garage and he put it on his car seat himself. The next day as we got in the car, Jacob asked if I knew why he had wanted the headrest put on. I said no, and thought he would just be more comfortable. He said no, he was tired of Matthew touching his head in the car, and that this headrest might help Matthew stop.
As usual with Jacob, I was amazed at his thoughtfulness in thinking through the problem. Most of the time we are in the car Matthew does something to bother Jacob, often he touches his head. David has always rubbed Jacob's head as a way to comfort himself , he has done this since Jacob was a tiny baby. Jacob has always accepted this, and seems to know intuitively that this simple act calms David.
I am sure that Matthew wants to rub Jacob's head to "fit in", and not out of cruelty, however, Jacob has asked Matthew to stop this behavior multiple, multiple times, and he refuses to stop. Jacob's desire to put a physical barrier between himself and Matthew was such wonderful problem solving and showed so much thought. His ability to talk to me about this and to let me know that this is something he thinks about what important.
Throughout the 3 more days that Matthew was at camp, there were many times that Jacob would point out that it was quiet, or nice in our family, or as he would say, a good family of 3. I know that Jacob struggles with his emotions surrounding his feelings for Matthew. After all, Matthew is Jacob's older brother, and like any little brother, Jacob does look up to Matthew. However, Jacob also is realizing that having Matthew in our family at times presents challenges. Life is louder, more unpredictable, often repetitive and at times explosive when Matthew is with us.
During my second week of vacation, after Matthew had come home from Camp Chazak, I had the option of sending Matthew back to another camp he had attended this summer or having him with us for family activities. I knew that I wanted some family days, but I also knew that it was important for all of us that we have some more of these quieter days. We had been invited to go tubing on Wednesday with one of our family friends. Tubing is a fabulous activity- you ride down the river on a tube, you go as fast or as slow as the river takes you. Part of the time is spent chatting and laughing and being together, and part of the time is spent just enjoying the scene around you. I made the tough decision that David, Jacob and I would go tubing and Matthew would go to camp. I hated that it didn't make sense for him to come, but I also hated the idea of having him with us creating a different feeling to the day. My mom offered to take Matthew to dinner at night so that Matthew also had something special to look forward to, and this seemed to appease Matthew.
David, Jacob and our friends had a fabulous day on the river! We tubed for over 5.5 hours, we stopped to throw rocks, to catch crayfish and to splash around in the water. We giggled as we raced our tubes down the water and laughed as I repeatedly got stuck in the trees. Everyone got along, everyone was happy, and the day was rejuvenating.
Later in the week it was time for our annual trip to Moreau state park with other friends. Again I knew that with Matthew the day would have a different feel. Not a good or bad feel, but it would be different. With Matthew I would have been on guard all day- checking to see who he was talking to, playing with, and what he was doing. Without Matthew, I knew all would get along more easily, and that the play would be more cooperative. I knew the kids would all play together, build together and enjoy each other's company. There was a birthday party at camp complete with cupcakes, so it was an easy sell for Matthew to go to camp.
Again, as we were together at the Lake it was obvious that there is a feeling of relaxation. Sure David was goofy on the way up to the Lake, and he proclaimed himself crazy. On the way home there was some fighting over video games, but it was really kid stuff. With Matthew it goes to the next level and there is a non stop nature to the action.
Today as we prepare to end summer we spent the day at the town pool. This time Matthew came with us, and we had a fantastic day. The pool is somewhere that Matthew thrives. He lives for the diving board! The sensory input calms his body- he can jump off the diving board for hours upon hours and is completely at peace. When he came over to the little pool he played very happily, and got to be in the big brother role as he swam around Jacob and they played together. After being at the pool we drove to my parents house for dinner and Jacob and Matthew sat together in the back laughing as brothers laugh. They were singing and just being goofy.
Today was a day of success! I think for our family success is going to be best defined by time spent all together but punctuated with time spent apart. It is ok for me to decide that some activities are best when Matthew is with us, and other activities are best when Matthew is with another adult doing something that he loves. Family isn't about being together 100% of the time, but it is about enjoy your time when you are together!
Wednesday, August 15, 2012
This old dog is learning new tricks
Matthew and David have spent many weeks this summer at a brand new camp program that has been created by an organization that works with adults and children with brain damage. The camp has been created for children on the autism spectrum and also for children with ADHD and other learning challenges. One of the most interesting parts of this program for me has been learning the techniques that are incorporated in this summer camp. We had a meeting last week where the parents were taught some of the buzz words that the children are using at camp:
1. Big deal/Little Deal- so often the children get upset disproportionately to the problem. Helping a child to clarify whether a problem is a "big deal" or a "little deal" helps them to better monitor their response to the situation.
2. Ready/Not Ready- helps a child to determine whether they are ready to participate or not ready to participate and check in with their emotions and actions.
3. Make a Plan- for children on the autism spectrum and with any sort of developmental issues, often their thoughts are scattered, so making a plan gives the child a guide for how to get through a situation.
At camp these techniques are used all day long! I knew that these techniques would be useful when David started saying "it's a little deal" all on his own in response to a problem. This helped me to teach him this summer that having a poop accident is a "little deal", but having a poop accident and then sitting on the carpet and not coming to get changed is a "big deal".
We have talked about "ready/not ready" when David is struggling to keep his hands to himself in the car. "Are you ready to ride in your spot next to Jacob, or are you not ready, and need to move to the back?" Typically just using these phrases helps David to cue in and move to the next step.
Tonight I had a chance to have a parent meeting with Dr Tim Feeney, one of the directors of the program. Tim specializes in working with children and adults with Traumatic brain injuries, and has spent time at camp working with all of the children. I was so excited to meet with Tim because I wanted him to help me see where I went wrong with a problem Matthew had yesterday and get him to help me problem solve for the future.
The short story of the problem is that I wanted to go to Karate class, and I knew it was touch and go as to whether the boys would be able to behave while I took my class. I prepped them for what "proper behavior" was and what was expected and then said that if they did well we would go out for ice cream afterwards. Matthew took his IPOD with him, and David and Jacob brought books so I thought we had a good chance of being successful. Unfortunately, Matthew interrupted class 3 times, and David bothered Jacob throughout the class, so I ended up leaving after only 30 minutes of class rather than the full hour. Because Jacob had behaved I felt that he had earned his ice cream, however the other 2 had not earned ice cream. I went to get Jacob a quick cone and Matthew went BALLISTIC! He was running through the parking lot, threatening to run onto Deleware Avenue, cursing and basically totally out of control. I tried talking to him about making a plan. I stayed calm and talked about ready/not ready, but he was having no part of it. He was angry and simply out of control.
Thankfully, a friend happened to be having ice cream at the same time, and after a while Matthew settled down when she offered to drive him home. He had a nice ride with her and then came home. He of course was calm, me not so much anymore.
So I asked Tim where did I go wrong? What should I have done differently?
Tim first suggested giving Jacob an IOU for ice cream for another day. I felt like this wasn't fair to Jacob, and Tim continued to brainstorm.
His next thought was that I could have gone to Stewart's to pick up milk and at the same time gotten Jacob a small ice cream. He thought this may not have caused as big an upset for Matthew and certainly would have at least kept him off of Deleware Avenue. He also suggested that I could have gotten Jacob an ice cream at Stewarts and Matthew and David something small, that this would make the point that they had lost the golden prize, but that all was not lost and they could try again for ice cream another day.
I had thought I had done so well because I stayed calm, I used the buzz words, and I didnt make Jacob lose out on his reward because of the other boys behavior. However in talking with Tim I realized a few things:
1. Jacob still lost out- how good did the ice cream taste while watching and listening to Matthew's tantrum?
2. Matthew lost out on a learning opportunity because he was too angry and explosive to learn from what happened
3. I lost track of the little picture which is that 3 boys lasted 30 minutes while I did something I loved. Just a year ago 30 minutes wouldn't have been possible. Sure, they didn't last an hour, and sure I was embarrassed by their behavior, but in reality 30 minutes is still to be celebrated.
One of the best parts of talking to Tim was that he was able to help me put into words the struggle I have with being Matthew's mom at times. We have had a good summer, lots of good days, however I am often tired of being accosted by Matthew's questions from the very second I open my eyes until the second he falls asleep. It is an awful lot to hear any other human talk as much as Matthew talks. Tim said when you are with Matthew it is almost like you are constantly being verbally assaulted. You cannot predict as the listener what he is going to say, and often the conversations are disjointed and it takes a lot of effort as the listener to stay on task with his conversation. This is exhausting as the listener. Tim clarified for me that it is ok to feel exhausted, that everyone who is with Matthew feels this exhaustion. It is always helpful for me to have my feelings validated, and to have the visual of being verbally accosted for some reason made a lot of sense to me and was able to help me put my emotions into context.
Raising any child or children is a learning process. Raising children with special needs requires learning because the child does not follow the typical developmental pattern, but the good news is that with each new technique I learn, my parenting toolbox becomes more full, and I am more ready to parent with success.
1. Big deal/Little Deal- so often the children get upset disproportionately to the problem. Helping a child to clarify whether a problem is a "big deal" or a "little deal" helps them to better monitor their response to the situation.
2. Ready/Not Ready- helps a child to determine whether they are ready to participate or not ready to participate and check in with their emotions and actions.
3. Make a Plan- for children on the autism spectrum and with any sort of developmental issues, often their thoughts are scattered, so making a plan gives the child a guide for how to get through a situation.
At camp these techniques are used all day long! I knew that these techniques would be useful when David started saying "it's a little deal" all on his own in response to a problem. This helped me to teach him this summer that having a poop accident is a "little deal", but having a poop accident and then sitting on the carpet and not coming to get changed is a "big deal".
We have talked about "ready/not ready" when David is struggling to keep his hands to himself in the car. "Are you ready to ride in your spot next to Jacob, or are you not ready, and need to move to the back?" Typically just using these phrases helps David to cue in and move to the next step.
Tonight I had a chance to have a parent meeting with Dr Tim Feeney, one of the directors of the program. Tim specializes in working with children and adults with Traumatic brain injuries, and has spent time at camp working with all of the children. I was so excited to meet with Tim because I wanted him to help me see where I went wrong with a problem Matthew had yesterday and get him to help me problem solve for the future.
The short story of the problem is that I wanted to go to Karate class, and I knew it was touch and go as to whether the boys would be able to behave while I took my class. I prepped them for what "proper behavior" was and what was expected and then said that if they did well we would go out for ice cream afterwards. Matthew took his IPOD with him, and David and Jacob brought books so I thought we had a good chance of being successful. Unfortunately, Matthew interrupted class 3 times, and David bothered Jacob throughout the class, so I ended up leaving after only 30 minutes of class rather than the full hour. Because Jacob had behaved I felt that he had earned his ice cream, however the other 2 had not earned ice cream. I went to get Jacob a quick cone and Matthew went BALLISTIC! He was running through the parking lot, threatening to run onto Deleware Avenue, cursing and basically totally out of control. I tried talking to him about making a plan. I stayed calm and talked about ready/not ready, but he was having no part of it. He was angry and simply out of control.
Thankfully, a friend happened to be having ice cream at the same time, and after a while Matthew settled down when she offered to drive him home. He had a nice ride with her and then came home. He of course was calm, me not so much anymore.
So I asked Tim where did I go wrong? What should I have done differently?
Tim first suggested giving Jacob an IOU for ice cream for another day. I felt like this wasn't fair to Jacob, and Tim continued to brainstorm.
His next thought was that I could have gone to Stewart's to pick up milk and at the same time gotten Jacob a small ice cream. He thought this may not have caused as big an upset for Matthew and certainly would have at least kept him off of Deleware Avenue. He also suggested that I could have gotten Jacob an ice cream at Stewarts and Matthew and David something small, that this would make the point that they had lost the golden prize, but that all was not lost and they could try again for ice cream another day.
I had thought I had done so well because I stayed calm, I used the buzz words, and I didnt make Jacob lose out on his reward because of the other boys behavior. However in talking with Tim I realized a few things:
1. Jacob still lost out- how good did the ice cream taste while watching and listening to Matthew's tantrum?
2. Matthew lost out on a learning opportunity because he was too angry and explosive to learn from what happened
3. I lost track of the little picture which is that 3 boys lasted 30 minutes while I did something I loved. Just a year ago 30 minutes wouldn't have been possible. Sure, they didn't last an hour, and sure I was embarrassed by their behavior, but in reality 30 minutes is still to be celebrated.
One of the best parts of talking to Tim was that he was able to help me put into words the struggle I have with being Matthew's mom at times. We have had a good summer, lots of good days, however I am often tired of being accosted by Matthew's questions from the very second I open my eyes until the second he falls asleep. It is an awful lot to hear any other human talk as much as Matthew talks. Tim said when you are with Matthew it is almost like you are constantly being verbally assaulted. You cannot predict as the listener what he is going to say, and often the conversations are disjointed and it takes a lot of effort as the listener to stay on task with his conversation. This is exhausting as the listener. Tim clarified for me that it is ok to feel exhausted, that everyone who is with Matthew feels this exhaustion. It is always helpful for me to have my feelings validated, and to have the visual of being verbally accosted for some reason made a lot of sense to me and was able to help me put my emotions into context.
Raising any child or children is a learning process. Raising children with special needs requires learning because the child does not follow the typical developmental pattern, but the good news is that with each new technique I learn, my parenting toolbox becomes more full, and I am more ready to parent with success.
Saturday, July 28, 2012
can't shake the blues
I have just been recently reminded that horrible, horrible things can happen. A friend of mine just lost her son to cancer. He was an amazing, amazing little boy with a contagious laugh. When Myles smiled the world around him smiled.
Given this reminder, one would think that I would understand the importance of being happy with what I have. However, over the course of the past week I have been unable to shake my frustration and pure exhaustion. Jacob has completed an evaluation with a respected educational psychologist and her recommendation is that he be considered for a cotaught classroom for kindergarten. There is not an obvious explanation except for ADHD as to why Jacob does not appear to be able to learn basic prek concepts such as letter recognition, number recognition, letter sounds, and introductory math concepts, however, Jacob is now five and a half and these basic concepts are just not clicking for him. He is still struggling to count past 13 and his ability to write his name fluctuates day to day.
I feel overwhelmed with the responsibility for monitoring the education of these 3 children. I feel left out and like I can't find a group of friends where we belong. I feel sad because I just wanted one of my children to not need so much extra support. I know that speech and OT are not a big deal, but once we enter the arena of special education it means that life won't be easy for Jacob. It means that understanding and learning will always be harder than it needs to be.
I think I am grieving the children I "could have had". I look at my family and see the children that are created by birth by my brothers, cousins, etc....and I see the children I could have genetically had. The children who are at the top of their class, for whom learning comes easy. Sure there are other problems, no one raises children without problems, but the problems are "typical" childhood problems. There is something about parenting a child who is a natural reader, just like their mom, or a fabulous mathematician, just like their dad, that right now I am wishing for.
I know that I will get it back together, and I will fight the good fight. Right now, though it all just seems like a lot. The summer is ticking away, and I still have so much to do.
1. Matthew is starting at a new school, in a new program with so much for me to learn. I am nervous, but excited, but unsure of how being part of a BOCES program rather than an in district student works.
2. David achieved almost none of the goals on his IEP last year. I have to meet with the school to figure out what went wrong, how we can fix this years IEP so it is more appropriate and then monitor him more closely. David has so much potential, but it has not yet been unlocked. I need the district to help us unlock his learning style so that we can make sure we maximize his potential this year.
3. For Jacob, it is about ensuring that he is in the right classroom and monitored so that we decrease his frustration and increase his focus. His body doesnt seem to do what his brain tells it which makes writing hard. It seems like he needs a lot of extra effort to learn, but most 5 year old boys don't want to put forth extra effort.
While I am juggling all of this, I am also doing all that needs to be done at work. It is just an awful lot with a ticking deadline looming.
I know that the fact that I can juggle all of these things is the ultimate gift, I am certainly thankful to be trusted to raise these 3 boys, but at times I get overwhelmed and desire one aspect of parenting to be easier or more typical at least.
Given this reminder, one would think that I would understand the importance of being happy with what I have. However, over the course of the past week I have been unable to shake my frustration and pure exhaustion. Jacob has completed an evaluation with a respected educational psychologist and her recommendation is that he be considered for a cotaught classroom for kindergarten. There is not an obvious explanation except for ADHD as to why Jacob does not appear to be able to learn basic prek concepts such as letter recognition, number recognition, letter sounds, and introductory math concepts, however, Jacob is now five and a half and these basic concepts are just not clicking for him. He is still struggling to count past 13 and his ability to write his name fluctuates day to day.
I feel overwhelmed with the responsibility for monitoring the education of these 3 children. I feel left out and like I can't find a group of friends where we belong. I feel sad because I just wanted one of my children to not need so much extra support. I know that speech and OT are not a big deal, but once we enter the arena of special education it means that life won't be easy for Jacob. It means that understanding and learning will always be harder than it needs to be.
I think I am grieving the children I "could have had". I look at my family and see the children that are created by birth by my brothers, cousins, etc....and I see the children I could have genetically had. The children who are at the top of their class, for whom learning comes easy. Sure there are other problems, no one raises children without problems, but the problems are "typical" childhood problems. There is something about parenting a child who is a natural reader, just like their mom, or a fabulous mathematician, just like their dad, that right now I am wishing for.
I know that I will get it back together, and I will fight the good fight. Right now, though it all just seems like a lot. The summer is ticking away, and I still have so much to do.
1. Matthew is starting at a new school, in a new program with so much for me to learn. I am nervous, but excited, but unsure of how being part of a BOCES program rather than an in district student works.
2. David achieved almost none of the goals on his IEP last year. I have to meet with the school to figure out what went wrong, how we can fix this years IEP so it is more appropriate and then monitor him more closely. David has so much potential, but it has not yet been unlocked. I need the district to help us unlock his learning style so that we can make sure we maximize his potential this year.
3. For Jacob, it is about ensuring that he is in the right classroom and monitored so that we decrease his frustration and increase his focus. His body doesnt seem to do what his brain tells it which makes writing hard. It seems like he needs a lot of extra effort to learn, but most 5 year old boys don't want to put forth extra effort.
While I am juggling all of this, I am also doing all that needs to be done at work. It is just an awful lot with a ticking deadline looming.
I know that the fact that I can juggle all of these things is the ultimate gift, I am certainly thankful to be trusted to raise these 3 boys, but at times I get overwhelmed and desire one aspect of parenting to be easier or more typical at least.
Wednesday, July 18, 2012
15q duplication specialist
If you have known the Bloom boys for any length of time, you know that nothing has come super easily. Both of my older boys went through about five years and many diagnosis before we were able to determine what exactly was the cause of their specific delays and disabilities. For David it wasn't until we did genetics testing when he was 6 that we determined that he has a duplication on his 15th chromosome. The good news is that this duplication will not affect his life span or cause him to deteriorate skill wise. The bad news is that this is a little known duplication, so while it was great that we learned what was wrong, no doctors seemed to have any good answers.....that is until NOW!!!
David and I spent Tuesday and Wednesday in Boston at Massachusetts General Hospital meeting with Dr Thibert who runs the 15Qduplication clinic! Dr Thibert was wonderful. He answered my questions, spent time talking with David and made sense of everything. However, as great as it was to learn from Dr Thibert, it was even better to have time alone with David!
David is the middle child, and compared to Matthew and Jacob, he is very, very quiet. Actually, compared to most children, David would be qualified as very, very quiet. As we started driving to Boston Monday night, it was nice to just be with David. He was funny, and charming. He had a book full of hotel coupons, so he started the trip looking for hotels for us, he found the Massachusetts portion of the book, and then picked which hotels he liked best. He would read through which hotels had breakfast and would tell me excitedly why we had to choose those. He was giddy, and chatty and fabulous to be with!
Then after we stopped for dinner, I made a few calls and finally booked a hotel, David was happy because it had breakfast, and then he helped me find the highway exit where the hotel was located. As we drove into the parking lot, I wasn't sure it was somewhere I wanted to stay, I don't need the best of the best, but I do prefer to stay in a hotel rather than a motel. While this was listed as a hotel, it was truly a motel and so as I started to drive out of the parking lot, I heard an amazing voice from the back seat saying, "please don't go, I have to go to bed, I am so tired, don't leave, don't leave". Well, hotel or motel, when David speaks, I have to listen! He is a child who uses words very cautiously, so when he says something you know he means it! We got a hotel room,snuggled in for the night, and had a great night together! David giggled as he put on pajamas and just seemed to be happy for us to be together.
As we got up in the morning David of course got his pancakes and then we were on the road to see Dr Thibert. We got stuck in horrendous traffic. Our appointment was 30 miles from our hotel and it took 2 hours and 15 minutes for us to get to the hospital. Throughout the entire drive, David just kept telling me how he made the traffic come, and helped me navigate. When we finally arrived at the doctor's office, David was wonderful while we chatted about him. The doctor was wonderful. He listened to the "story of David" and was reassuring as everything I described was similar to so many of the other children he had met.
After meeting with the doctor, we went to the hospital for a 24 hour EEG. David and I had talked a lot about what it would be like to get hooked up to the EEG, but he was still nervous. As the technician came in to hook David up, you could see the tears in his eyes well up, so very sad. He was a trooper though. I was amazed when at one point David said, "I want a break". He is a child who rarely now tells me he is hungry or thirsty, and struggles to advocate for himself, so to hear that he wanted a break was AMAZING! I knew we had to honor the request and was amazed at the caring technician who patiently waited as David and I counted to 10 for a break. She had 29 leads to put on him, and every single time he asked for a break, she obliged and allowed him to be in control of the pace of the procedure.
David and I spent the rest of the day doing puzzles and playing games. I was so happy when my Aunt came to spend time with us, it can be a LONG day in one room so to have company allowed me to chat with a grown up, and also gave me some time to walk around the hospital, look for some snacks for David, and just take a few moments of time for myself.
Mass General is an incredible hospital! We have done an overnight EEG at Albany Medical Center 3 times and each time I have left in tears. The doctors didn't seem to understand David and no one at the hospital took time to get to know David, so when they watched him on the video, the feedback was consistently that he was autistic. David warms up to people slowly, but once he warms up he enjoys playing games, doing puzzles and being with people. The entire pediatric staff at Mass General got to know David. The Life specialists brought him puzzles, and even knew him well enough to know that after his blood was taken that he would love a sponge bob bandaid. Each of the nurses made sure to spend time with David and loved getting his adorable smile and wave when they entered the room. Even when the doctors did rounds, it was family centered, so I was an active part of the team rounds, and I was asked my opinion and thoughts as the person who knows David best. What a wonderful experience. It is nice to know that there is a hospital that truly puts the needs of parents and children at the forefront of the experience.
As we were packing to leave on Wednesday morning, Dr Thibert came in to tell me about the EEG results. There is some activity in his temporal lobe which is the speech center that is abnormal, which makes sense because speech and language is a place where David struggles. David also had some unusual night time brain activity which is affecting his sleep, so the hope is that with improved sleep, his skills will improve.
As we were in the hospital preparing to leave on Wednesday, David wanted to know when Aunt Carol was coming back! Again, to know David, this is truly amazing! This means so much to me to know that David loved his time with his Great Aunt. I promised him that we would see her again soon!
After being discharged, we did a Duck Tour ride- from our hospital room we had spent 2 days watching the duck tour boats, so it only made sense that we HAD to do a duck tour before we left Boston. This was a great special time for David and me to just have a fun experience together. He seemed to love hearing all about Boston, and enjoyed the entire Duck boat experience.
After the Duck boats it was time to head for home. Of course, just as we start leaving.....torrential downpour! From the back seat came the cutest, evilest giggle! David determined that he is the one who "made it rain!" Every time the rain came and went, the same giggle from the backseat came and a winning smile from the "maker of the rain!"
As we got closer and closer to Albany, David got quiet. As we got off at the Selkirk exit I looked back and noticed that David looked sad. I asked if he was ready to see his brothers and again the little tears streamed down his face. For David and me, these 48 hours alone together were a reminder.....he needs time alone with just me. It is when his voice is best heard. It is when the world slows down to a "David pace", and when he gets that little extra snuggle. I think all children love 1:1 time with a parent, but for a child in a single parent family, this time is that much more important.
This trip to Boston was amazing for so many reasons, but the most important reason was that it was David and mommy time! Carving out more David and mommy time is so important, and this just reminded me of how a little bit of time, can mean the world to any child (and mom)!
David and I spent Tuesday and Wednesday in Boston at Massachusetts General Hospital meeting with Dr Thibert who runs the 15Qduplication clinic! Dr Thibert was wonderful. He answered my questions, spent time talking with David and made sense of everything. However, as great as it was to learn from Dr Thibert, it was even better to have time alone with David!
David is the middle child, and compared to Matthew and Jacob, he is very, very quiet. Actually, compared to most children, David would be qualified as very, very quiet. As we started driving to Boston Monday night, it was nice to just be with David. He was funny, and charming. He had a book full of hotel coupons, so he started the trip looking for hotels for us, he found the Massachusetts portion of the book, and then picked which hotels he liked best. He would read through which hotels had breakfast and would tell me excitedly why we had to choose those. He was giddy, and chatty and fabulous to be with!
Then after we stopped for dinner, I made a few calls and finally booked a hotel, David was happy because it had breakfast, and then he helped me find the highway exit where the hotel was located. As we drove into the parking lot, I wasn't sure it was somewhere I wanted to stay, I don't need the best of the best, but I do prefer to stay in a hotel rather than a motel. While this was listed as a hotel, it was truly a motel and so as I started to drive out of the parking lot, I heard an amazing voice from the back seat saying, "please don't go, I have to go to bed, I am so tired, don't leave, don't leave". Well, hotel or motel, when David speaks, I have to listen! He is a child who uses words very cautiously, so when he says something you know he means it! We got a hotel room,snuggled in for the night, and had a great night together! David giggled as he put on pajamas and just seemed to be happy for us to be together.
As we got up in the morning David of course got his pancakes and then we were on the road to see Dr Thibert. We got stuck in horrendous traffic. Our appointment was 30 miles from our hotel and it took 2 hours and 15 minutes for us to get to the hospital. Throughout the entire drive, David just kept telling me how he made the traffic come, and helped me navigate. When we finally arrived at the doctor's office, David was wonderful while we chatted about him. The doctor was wonderful. He listened to the "story of David" and was reassuring as everything I described was similar to so many of the other children he had met.
After meeting with the doctor, we went to the hospital for a 24 hour EEG. David and I had talked a lot about what it would be like to get hooked up to the EEG, but he was still nervous. As the technician came in to hook David up, you could see the tears in his eyes well up, so very sad. He was a trooper though. I was amazed when at one point David said, "I want a break". He is a child who rarely now tells me he is hungry or thirsty, and struggles to advocate for himself, so to hear that he wanted a break was AMAZING! I knew we had to honor the request and was amazed at the caring technician who patiently waited as David and I counted to 10 for a break. She had 29 leads to put on him, and every single time he asked for a break, she obliged and allowed him to be in control of the pace of the procedure.
David and I spent the rest of the day doing puzzles and playing games. I was so happy when my Aunt came to spend time with us, it can be a LONG day in one room so to have company allowed me to chat with a grown up, and also gave me some time to walk around the hospital, look for some snacks for David, and just take a few moments of time for myself.
Mass General is an incredible hospital! We have done an overnight EEG at Albany Medical Center 3 times and each time I have left in tears. The doctors didn't seem to understand David and no one at the hospital took time to get to know David, so when they watched him on the video, the feedback was consistently that he was autistic. David warms up to people slowly, but once he warms up he enjoys playing games, doing puzzles and being with people. The entire pediatric staff at Mass General got to know David. The Life specialists brought him puzzles, and even knew him well enough to know that after his blood was taken that he would love a sponge bob bandaid. Each of the nurses made sure to spend time with David and loved getting his adorable smile and wave when they entered the room. Even when the doctors did rounds, it was family centered, so I was an active part of the team rounds, and I was asked my opinion and thoughts as the person who knows David best. What a wonderful experience. It is nice to know that there is a hospital that truly puts the needs of parents and children at the forefront of the experience.
As we were packing to leave on Wednesday morning, Dr Thibert came in to tell me about the EEG results. There is some activity in his temporal lobe which is the speech center that is abnormal, which makes sense because speech and language is a place where David struggles. David also had some unusual night time brain activity which is affecting his sleep, so the hope is that with improved sleep, his skills will improve.
As we were in the hospital preparing to leave on Wednesday, David wanted to know when Aunt Carol was coming back! Again, to know David, this is truly amazing! This means so much to me to know that David loved his time with his Great Aunt. I promised him that we would see her again soon!
After being discharged, we did a Duck Tour ride- from our hospital room we had spent 2 days watching the duck tour boats, so it only made sense that we HAD to do a duck tour before we left Boston. This was a great special time for David and me to just have a fun experience together. He seemed to love hearing all about Boston, and enjoyed the entire Duck boat experience.
After the Duck boats it was time to head for home. Of course, just as we start leaving.....torrential downpour! From the back seat came the cutest, evilest giggle! David determined that he is the one who "made it rain!" Every time the rain came and went, the same giggle from the backseat came and a winning smile from the "maker of the rain!"
As we got closer and closer to Albany, David got quiet. As we got off at the Selkirk exit I looked back and noticed that David looked sad. I asked if he was ready to see his brothers and again the little tears streamed down his face. For David and me, these 48 hours alone together were a reminder.....he needs time alone with just me. It is when his voice is best heard. It is when the world slows down to a "David pace", and when he gets that little extra snuggle. I think all children love 1:1 time with a parent, but for a child in a single parent family, this time is that much more important.
This trip to Boston was amazing for so many reasons, but the most important reason was that it was David and mommy time! Carving out more David and mommy time is so important, and this just reminded me of how a little bit of time, can mean the world to any child (and mom)!
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