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.
Saturday, July 28, 2012
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)!
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!
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.
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!
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!
Tuesday, May 22, 2012
Pity party table of 1
I know that this is a post that I have to write so that I can begin to deal with reality. I am hoping that by putting my emotions on paper that I can get past the grieving stage and enter the action phase.
Matthew needs to go to a different program for 6th grade- I don't want him to go. I feel so many different emotions over this.
1. We moved to Bethlehem for the school district- When Matthew was entering Kindergarten I didn't like the program that Niskayuna was offering Matthew so I sent him to the Hebrew Academy knowing that would only work for 1 year. Then, as we negotiated for 1st grade for Matthew, Niskayuna wanted Matthew mainstreamed and I again felt passionately that this wasn't appropriate for him, so in February I put our house on the market. In August, I purchased a house in Delmar, and we moved the last week of August even before my house in Niskayuna had sold because I felt passionately that Matthew needed to be in the Bethlehem school district. In Bethlehem they had a self contained class where Matthew would be with 12 children who were similar to him. I felt that in a self contained class Matthew would have areas where he would succeed and areas where he would struggle. I never wanted him to be the child in a mainstream class who would be the lowest functioning socially and academically and I knew if he was mainstreamed that is what would happen, so I packed up the 3 boys, and we moved to Delmar with a purpose and a plan.
2. While it hasn't always been perfect, I have felt a connection to Glenmont school and the staff who have worked with Matthew. They supported me when he was first hospitalized at 4 Winds, they trusted me as Matthew's mom, they understand what it is to be Matthew's mom, and each staff member has found a piece of Matthew to love. With Matthew being a child in the district, there is always someone with eyes and ears on Matthew- he is a child that is seen when the CSE chairs spend time in the classroom. He has the opportunity to connect with children and then see them at the YMCA or at the town pool.
3. He is an "Eagle", the mascot of Bethlehem Central Schools. They sang a song tonight at his concert about Eagles, and I had tears streaming down my face. If Matthew goes elsewhere, he won't be an Eagle, he won't actually be an anything......Who will he belong to? I am looking at a BOCES program for Matthew that is housed in a Niskayuna school- a total ridiculous reality that could only happen in my life- move from Niskayuna, and in 6th grade my child goes physically back to Niskayuna as a BOCES student- where will he be part of a district? Would he attend the school halloween party in Niskayuna? the middle school programs in Delmar? He wouldnt really fit anywhere.
4. I feel like we are in free fall. I think that we will land in a safe place, but the in between time is making me so anxious, and my head is spinning. I want him to stay at Glenmont another year. I want him to go back to 3rd grade and have these last 2 years back so that I could enjoy them and live more in the moment while he had a class to be part of. Should I have had more playdates? Should he have gone to an out of district placement sooner so that in Middle school he could return back to district?
5. I feel a little insane to even have these feelings- in December I was looking at residential programs for Matthew, in the past 4 months, he has done so much better that it seems hard to believe that a residential program was truly a reality not so long ago. He spent from October-December living in the hospital and then at a respite program for 3 weeks because he was so unsafe at home, so looking at a school BOCES program is still a step up from where we were earlier this year, I should be thankful. And yet, I don't feel thankful, I feel heartbroken.
I want to kick and scream and beg Bethlehem to keep us, to keep Matthew, to make it work. I am still not sure that I can give up on this idea, but for now, I am planning to visit a BOCES class next week and I am hoping to fall in love with it and maybe if it feels right, then I can move forward more easily. Today I am stuck with a heavy heart and again just wishing it was easier.
Matthew needs to go to a different program for 6th grade- I don't want him to go. I feel so many different emotions over this.
1. We moved to Bethlehem for the school district- When Matthew was entering Kindergarten I didn't like the program that Niskayuna was offering Matthew so I sent him to the Hebrew Academy knowing that would only work for 1 year. Then, as we negotiated for 1st grade for Matthew, Niskayuna wanted Matthew mainstreamed and I again felt passionately that this wasn't appropriate for him, so in February I put our house on the market. In August, I purchased a house in Delmar, and we moved the last week of August even before my house in Niskayuna had sold because I felt passionately that Matthew needed to be in the Bethlehem school district. In Bethlehem they had a self contained class where Matthew would be with 12 children who were similar to him. I felt that in a self contained class Matthew would have areas where he would succeed and areas where he would struggle. I never wanted him to be the child in a mainstream class who would be the lowest functioning socially and academically and I knew if he was mainstreamed that is what would happen, so I packed up the 3 boys, and we moved to Delmar with a purpose and a plan.
2. While it hasn't always been perfect, I have felt a connection to Glenmont school and the staff who have worked with Matthew. They supported me when he was first hospitalized at 4 Winds, they trusted me as Matthew's mom, they understand what it is to be Matthew's mom, and each staff member has found a piece of Matthew to love. With Matthew being a child in the district, there is always someone with eyes and ears on Matthew- he is a child that is seen when the CSE chairs spend time in the classroom. He has the opportunity to connect with children and then see them at the YMCA or at the town pool.
3. He is an "Eagle", the mascot of Bethlehem Central Schools. They sang a song tonight at his concert about Eagles, and I had tears streaming down my face. If Matthew goes elsewhere, he won't be an Eagle, he won't actually be an anything......Who will he belong to? I am looking at a BOCES program for Matthew that is housed in a Niskayuna school- a total ridiculous reality that could only happen in my life- move from Niskayuna, and in 6th grade my child goes physically back to Niskayuna as a BOCES student- where will he be part of a district? Would he attend the school halloween party in Niskayuna? the middle school programs in Delmar? He wouldnt really fit anywhere.
4. I feel like we are in free fall. I think that we will land in a safe place, but the in between time is making me so anxious, and my head is spinning. I want him to stay at Glenmont another year. I want him to go back to 3rd grade and have these last 2 years back so that I could enjoy them and live more in the moment while he had a class to be part of. Should I have had more playdates? Should he have gone to an out of district placement sooner so that in Middle school he could return back to district?
5. I feel a little insane to even have these feelings- in December I was looking at residential programs for Matthew, in the past 4 months, he has done so much better that it seems hard to believe that a residential program was truly a reality not so long ago. He spent from October-December living in the hospital and then at a respite program for 3 weeks because he was so unsafe at home, so looking at a school BOCES program is still a step up from where we were earlier this year, I should be thankful. And yet, I don't feel thankful, I feel heartbroken.
I want to kick and scream and beg Bethlehem to keep us, to keep Matthew, to make it work. I am still not sure that I can give up on this idea, but for now, I am planning to visit a BOCES class next week and I am hoping to fall in love with it and maybe if it feels right, then I can move forward more easily. Today I am stuck with a heavy heart and again just wishing it was easier.
Sunday, May 20, 2012
update
There is so much that has been going on, I think the only thing that will make sense is to go child by child:
1. Jacob- How a child can have so much growth and yet be such a puzzle, I will never understand. We went to Jacob's kindergarten screening, and Jacob was petrified. I ended up staying with him for the beginning of the screening, but the teachers really wanted to see how he would do with me in the room next door so I was eventually able to make the split from him for a few minutes.
Jacob scored a dismal 10 out of 39 on his screening. While some of the things that he didn't get points for, Jacob can actually do, like identifying all of his colors, many of them he truly is struggling with. While he can jump and hop, he can't seem to do it on command. He also is unable to draw basic shapes such as a square, triangle or rectangle, and he could not identify 4 of the 6 letters they showed him.
I was able to speak to the kindergarten teachers and she said that most of the incoming kindegarteners are scoring in the 30's, a few are scoring lower, but all in the high 20's, and so she is eager to hear what happens when Jacob has his evaluation. I am counting the days until June 4 when Jacob will get a complete evaluation by an educational psychologist.
With Matthew and David, it was clear to me that there were global developmental issues, so I knew what path we would take and I could predict to some extent the services they would need. With Jacob, I maintain that he is a very smart little boy. There is some reason that he is unable to learn as quickly as he should be able to, and there is a reason he is struggling, but I don't believe that it is due to severe developmental issues, so I am hoping to gather information with the evaluation that will allow us to learn techniques to help Jacob gain the skills he needs.
2. David is doing well, but is definitely struggling with seizures. The only positive about this is that he seems to be able to tell me recently what is going on. Tonight we were at a wedding and David froze, and I could tell by looking at him that something was wrong. When I asked him what was wrong he told me for the first time that he didn't feel well. I picked him up and held him for a few minutes and then we sat while I rubbed his back. He kept telling me he wasn't feeling well, and that his head was bothering him. He wasn't able to say much else about what was wrong, but he was able to be comforted and used words rather than behaviors to show that he was uncomfortable.
He then started telling me that he wanted to go home. Thankfully, I convinced him to go outside for a few minutes and within 10 minutes of being outside, he returned to regular David again. He was able to share that not feeling good was scary, and I reassured him that I was with him.
It is a huge step to have him be able to communicate with me.
3. Matthew is back to being up and down. We have had some major struggles with tantrums again recently, which is hard to return to, but he is also having some moments where he seems to be more in touch with what he feels. He was able to tell me tonight that he is scared that he will have to go back to 4 Winds because he is scaring his brothers, and he and I were able to talk about what he needs to do to stay at home.
I am looking for a program for him for the Fall because his teachers feel that the middle school programs are not appropriate for him. This is very scary, and there don't appear to be nearly enough choices. I am feeling very up and down emotionally about all of this, and I know for Matthew this is also a nervous time. I told him that he would not be going to the middle school, because he was talking about it all the time and I felt like he had to know that he would be going somewhere else- it seemed unfair to have him getting excited about the middle school, with me knowing he wouldnt be going there.
I am hoping that his emotions settle a little more over the next few days, but I know the end of the year for him is always a stressful time, and with him graduating from 5th grade, that is likely making this a harder year for him and therefore he is having more outbursts.
Here is to more family time, and some answers about what is going on with all 3 boys!
1. Jacob- How a child can have so much growth and yet be such a puzzle, I will never understand. We went to Jacob's kindergarten screening, and Jacob was petrified. I ended up staying with him for the beginning of the screening, but the teachers really wanted to see how he would do with me in the room next door so I was eventually able to make the split from him for a few minutes.
Jacob scored a dismal 10 out of 39 on his screening. While some of the things that he didn't get points for, Jacob can actually do, like identifying all of his colors, many of them he truly is struggling with. While he can jump and hop, he can't seem to do it on command. He also is unable to draw basic shapes such as a square, triangle or rectangle, and he could not identify 4 of the 6 letters they showed him.
I was able to speak to the kindergarten teachers and she said that most of the incoming kindegarteners are scoring in the 30's, a few are scoring lower, but all in the high 20's, and so she is eager to hear what happens when Jacob has his evaluation. I am counting the days until June 4 when Jacob will get a complete evaluation by an educational psychologist.
With Matthew and David, it was clear to me that there were global developmental issues, so I knew what path we would take and I could predict to some extent the services they would need. With Jacob, I maintain that he is a very smart little boy. There is some reason that he is unable to learn as quickly as he should be able to, and there is a reason he is struggling, but I don't believe that it is due to severe developmental issues, so I am hoping to gather information with the evaluation that will allow us to learn techniques to help Jacob gain the skills he needs.
2. David is doing well, but is definitely struggling with seizures. The only positive about this is that he seems to be able to tell me recently what is going on. Tonight we were at a wedding and David froze, and I could tell by looking at him that something was wrong. When I asked him what was wrong he told me for the first time that he didn't feel well. I picked him up and held him for a few minutes and then we sat while I rubbed his back. He kept telling me he wasn't feeling well, and that his head was bothering him. He wasn't able to say much else about what was wrong, but he was able to be comforted and used words rather than behaviors to show that he was uncomfortable.
He then started telling me that he wanted to go home. Thankfully, I convinced him to go outside for a few minutes and within 10 minutes of being outside, he returned to regular David again. He was able to share that not feeling good was scary, and I reassured him that I was with him.
It is a huge step to have him be able to communicate with me.
3. Matthew is back to being up and down. We have had some major struggles with tantrums again recently, which is hard to return to, but he is also having some moments where he seems to be more in touch with what he feels. He was able to tell me tonight that he is scared that he will have to go back to 4 Winds because he is scaring his brothers, and he and I were able to talk about what he needs to do to stay at home.
I am looking for a program for him for the Fall because his teachers feel that the middle school programs are not appropriate for him. This is very scary, and there don't appear to be nearly enough choices. I am feeling very up and down emotionally about all of this, and I know for Matthew this is also a nervous time. I told him that he would not be going to the middle school, because he was talking about it all the time and I felt like he had to know that he would be going somewhere else- it seemed unfair to have him getting excited about the middle school, with me knowing he wouldnt be going there.
I am hoping that his emotions settle a little more over the next few days, but I know the end of the year for him is always a stressful time, and with him graduating from 5th grade, that is likely making this a harder year for him and therefore he is having more outbursts.
Here is to more family time, and some answers about what is going on with all 3 boys!
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