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!
Thursday, June 28, 2012
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!
Saturday, April 21, 2012
CSE meetings, premeetings and too much for one mom
Once again my brain is full, and I feel that I am spinning my wheels and moving too quickly but going nowhere.
I am preparing for Jacob's transition to kindergarten CSE meeting and Matthew's transition to 6th grade CSE meeting and neither of these meetings is going to be easy.
As the director of a Nursery School, I feel like I have a good sense of what an "average" 4 or 5 year old is doing. I couldn't tell you when children start to write their names, but I can tell you that it is a rare child who leaves preschool not yet writing their name. There are no hard and fast rules for when children recognize letters and numbers and learn to count to 20, but these are things that most children are doing these days before they enter Kindergarten.
Some of the reasons that I kept Jacob out of kindergarten last year were because he was not yet emotionally at a place that I felt he was ready for kindergarten, but additionally, he didn't have the basic skills of recognizing any letters, writing any letters or counting to 10. Now, it is a year later, and I feel like we are not that much further ahead. While we have worked on him writing J-A-C-O-B, he struggles to write any of the 5 letters consistently except for the O. His teachers and I have worked with him on letter recognition, and while he at times can recognize the letters after working on them, a day later it is like he never learned them.
Additionally, I am taking Jacob to karate class 3 times each week, and each time it is hard to watch him struggle. So much of what they do in Karate is dependent on knowing your left and right- step back with your left foot, right foot forward, right hand out.......Jacob is very adept at covering up what he doesn't know. He watches all of the other kids and tries to figure out from them which hand is which. He delays moving until he can really see from the instructor what he is supposed to do, which puts him 3-5 seconds behind the rest of the kids in the class. Simply by being able to be alone with him at Karate, I have had the opportunity to see how hard it is for Jacob to do what many other kids just learn to do easily.
Jacob is currently receiving OT, speech therapy and one session per week of play therapy, and so I met with his therapists and his teachers a few weeks ago to gather information about where we thought Jacob was and how to best get him ready for Kindergarten. At the meeting the concern was raised that Jacob was having trouble with motor planning- essentially if Jacob is asked to do something-ie make a "j", what his brain tells his body to do is often misinterpreted, or creates a struggle for Jacob and the motor movements come out wrong. This makes life for Jacob hard, and the hardest part is that he is aware that what he is doing isn't correct but he cannot figure out how to fix and compensate for the motor planning challenges.
So now, I am preparing for Jacob's transition to Kindergarten meeting, and I know that I have a 5 year old who will not be as ready for kindergarten as many of the other children who are entering kindergarten with him. I hate to see him struggle, and would do anything to get him caught up and on target before he enters kindergarten, but unfortunately his learning challenges are going to take time and repetition to work through. I am hoping that at his CSE meeting we can get services approved for him for the summer time so that he can have more time to work on the necessary skills as he gets ready for kindergarten. Unfortunately, with budget cuts the way they are, I don't know if Jacob will get approved for services, so I have to work hard to make the case for why the services BEFORE he enters kindergarten are essential.
For Matthew's meeting I feel like I am getting the run around. After many phone calls, I now know that the district is thinking that it would be optimal for matthew to go to a program for 6th grade that is outside of the district. However, his meeting is on May 3, and I was supposed to have an opportunity to see the middle school program at Bethlehem middle school, and I want to see programs outside of the district so that I can see what options are available to me. However, it is now April 21, and after many, many phone calls I still have not had the chance to see any programs for matthew. This leaves me very little time to go see programs and make decisions for matthew.
I don't know exactly why the district feels that there is not a class for Matthew at the district Middle school- it looks like from what I have read that he would have to spend a portion of his day in the mainstream classes, and Matthew has never done this because he is not ready to succeed in mainstream classes cognitively or behaviorally, however I am surprised that the district doesn't have a special education class that would allow Matthew to be at the middle school without mainstreaming.
Unfortunately, the more time goes on before I have his meeting, and without being able to see the classes that are available, the more my anxiety is increasing. It is a challenge to know how often to call the school, and to reach out and remind them that I would like to visit possible classes for Matthew, with also recognizing that I know that the district staff is dealing with many families, and trying to balance the needs of everyone.
Patience is not something I am very good at, and especially as my anxiety increases, my ability to be patient decreases, but I am working hard to remember that in good time, decisions will be made, and that I am working with a district of full of people who I trust and have worked with successfully in the past. Here is to knowing that decisions will be made, and both boys will get the support they need in good time.
I am preparing for Jacob's transition to kindergarten CSE meeting and Matthew's transition to 6th grade CSE meeting and neither of these meetings is going to be easy.
As the director of a Nursery School, I feel like I have a good sense of what an "average" 4 or 5 year old is doing. I couldn't tell you when children start to write their names, but I can tell you that it is a rare child who leaves preschool not yet writing their name. There are no hard and fast rules for when children recognize letters and numbers and learn to count to 20, but these are things that most children are doing these days before they enter Kindergarten.
Some of the reasons that I kept Jacob out of kindergarten last year were because he was not yet emotionally at a place that I felt he was ready for kindergarten, but additionally, he didn't have the basic skills of recognizing any letters, writing any letters or counting to 10. Now, it is a year later, and I feel like we are not that much further ahead. While we have worked on him writing J-A-C-O-B, he struggles to write any of the 5 letters consistently except for the O. His teachers and I have worked with him on letter recognition, and while he at times can recognize the letters after working on them, a day later it is like he never learned them.
Additionally, I am taking Jacob to karate class 3 times each week, and each time it is hard to watch him struggle. So much of what they do in Karate is dependent on knowing your left and right- step back with your left foot, right foot forward, right hand out.......Jacob is very adept at covering up what he doesn't know. He watches all of the other kids and tries to figure out from them which hand is which. He delays moving until he can really see from the instructor what he is supposed to do, which puts him 3-5 seconds behind the rest of the kids in the class. Simply by being able to be alone with him at Karate, I have had the opportunity to see how hard it is for Jacob to do what many other kids just learn to do easily.
Jacob is currently receiving OT, speech therapy and one session per week of play therapy, and so I met with his therapists and his teachers a few weeks ago to gather information about where we thought Jacob was and how to best get him ready for Kindergarten. At the meeting the concern was raised that Jacob was having trouble with motor planning- essentially if Jacob is asked to do something-ie make a "j", what his brain tells his body to do is often misinterpreted, or creates a struggle for Jacob and the motor movements come out wrong. This makes life for Jacob hard, and the hardest part is that he is aware that what he is doing isn't correct but he cannot figure out how to fix and compensate for the motor planning challenges.
So now, I am preparing for Jacob's transition to Kindergarten meeting, and I know that I have a 5 year old who will not be as ready for kindergarten as many of the other children who are entering kindergarten with him. I hate to see him struggle, and would do anything to get him caught up and on target before he enters kindergarten, but unfortunately his learning challenges are going to take time and repetition to work through. I am hoping that at his CSE meeting we can get services approved for him for the summer time so that he can have more time to work on the necessary skills as he gets ready for kindergarten. Unfortunately, with budget cuts the way they are, I don't know if Jacob will get approved for services, so I have to work hard to make the case for why the services BEFORE he enters kindergarten are essential.
For Matthew's meeting I feel like I am getting the run around. After many phone calls, I now know that the district is thinking that it would be optimal for matthew to go to a program for 6th grade that is outside of the district. However, his meeting is on May 3, and I was supposed to have an opportunity to see the middle school program at Bethlehem middle school, and I want to see programs outside of the district so that I can see what options are available to me. However, it is now April 21, and after many, many phone calls I still have not had the chance to see any programs for matthew. This leaves me very little time to go see programs and make decisions for matthew.
I don't know exactly why the district feels that there is not a class for Matthew at the district Middle school- it looks like from what I have read that he would have to spend a portion of his day in the mainstream classes, and Matthew has never done this because he is not ready to succeed in mainstream classes cognitively or behaviorally, however I am surprised that the district doesn't have a special education class that would allow Matthew to be at the middle school without mainstreaming.
Unfortunately, the more time goes on before I have his meeting, and without being able to see the classes that are available, the more my anxiety is increasing. It is a challenge to know how often to call the school, and to reach out and remind them that I would like to visit possible classes for Matthew, with also recognizing that I know that the district staff is dealing with many families, and trying to balance the needs of everyone.
Patience is not something I am very good at, and especially as my anxiety increases, my ability to be patient decreases, but I am working hard to remember that in good time, decisions will be made, and that I am working with a district of full of people who I trust and have worked with successfully in the past. Here is to knowing that decisions will be made, and both boys will get the support they need in good time.
Friday, April 13, 2012
Vacation week
It is Friday of vacation week and I am struggling. we have had a good break, we had Passover with family and then we took an overnight trip to Mystic Seaport. unfortunately we are at the time of family togetherness where I cannot stand to be asked the same question again. I simply can't talk about the traffic wires, I can't pretend to wonder what the black boxes are that are on the traffic wires and why some have one black box and others two.
I can't talk about what's for dinner before we eat breakfast, and again after breakfast and before lunch, and after lunch and then every 15 minutes from 3:00 on. I can't answer the same questions or have the same circular conversations, my ears are tired. I hate that I am out of patience with Matthew because he s doing better than he has done in over a year, so really I should simply enjoy this calm ride and a huge part of me knows that and I am trying hard.
However, as the only adult who can answer him, and given the fact that he is infinitely more insistent than I am patient, it is my goal to practice deep breathing over the next 48 hours before he returns to school. I am planning to up the fun over the next two days and end vacation week on a high, and remind myself that his behaviors are not his fault and his questions are probably more intense for him than they are for me.
Here's to a good final 2 days of spring break!
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