I feel like I am stuck. I often feel like I am at the top of a parenting cliff with Matthew, and I am avoiding us falling down. Unfortunately, I am not the only one who is responsible for the decisions that keep us teetering at the top of the cliff, and I am not the only one who will be responsible if we fall, but i will be the one to shoulder the load, as I am Matthew's mom.
The biggest problem when you are raising a human being is that they are constantly being molded and formed by everything around them. From the food they eat, to the songs they listen to , and the company they keep, everything is impacting the development of the human brain.
If I had my way, I might choose right now as the best time to put Matthew in a bubble of sorts so that I could have complete and total control over all of the things that impact his development. Honestly, if I was independently wealthy, I may choose now as the time to take Matthew from school and home school him as a way of purifying his environment. I am not sure that I could do this and maintain my own sanity, but, as a mom, I would give up anything for my children, and in this case, while it might mean giving up my sanity, it might mean saving Matthew and I am willing to risk my sanity to save my son.
I am constantly trying to figure out right now how much of Matthew's struggles are developmental in nature, how much is due to mental health instability and how much is potentially Matthew's response to being surrounded all day by other children with challenges and mental health instability. In Matthew's school it is fairly common for children to be out of control. It is fairly common to be in a classroom with a child cursing, and being disrespectful towards staff and other children. It is common for their to be a child in crisis. Given that this is all common place, I find myself wondering would Matthew's behavior be the same if he was not exposed to the chaos of his school?
Would Matthew curse at adults if he wasn't surrounded by cursing at school?
Would Matthew lash out verbally and physically, if lashing out was not something he was exposed to daily at school?
Would Matthew treat teachers with disrespect if he wasn't seeing others treating teachers with disrespect?
Could Matthew be a different kind of student? Could Matthew be on a different path?
I have begged our school district to allow Matthew back into a district classroom. I have begged for him to be educated again inside a typical school building. I have begged for him to be educated in a school environment that offered him opportunities for music education, for interactions with typical peers. I have begged for him to be educated in a school that did not have rooms where children are locked in when they are out of control. I have begged them to let him be back in a school where he was not witnessing children being restrained by adults when they are out of control.
How would Matthew be different if he wasn't exposed to these things? How would he be different if he wasn't exposed to the language and behaviors he is surrounded by daily at his school?
I know that given his diagnosis, there are challenges that Matthew is likely to face. I also know that Matthew was a child who struggled even when he was in a special education class within a typical school setting.
I know that given his diagnosis, Matthew is a child who is likely to struggle with limits that are imposed on him. He is a child who is likely to struggle with self control, and attention to work. he is a child who is likely to be impulsive and reactive.
What I don't know is how much his current educational setting is impacting Matthew now and how much it will impact Matthew in the future. I have always felt like Matthew needed to be shown things in black and white. There is a right and a wrong. For Matthew, it was important that these distinctions be made clear. In Matthew's current school setting there is a lot of gray, and Matthew does not understand gray.
I don't have all of the answers for Matthew. I wish I did, it would make life easier. Last night as he cursed at me for over an hour I was unsure how to respond. I have learned over time that the better I am at controlling my own responses to Matthew's behavior, the better I feel about the situation. I have learned that for David and Jacob it is important for me to remain calm, especially when Matthew is out of control. However remaining calm when your child is screaming and cursing at you is a huge challenge. I wanted to scream back. I wanted to ask him who they hell he thought he was, and why did he think he could talk to me that way. I wanted to ask him what the hell he thought he was doing calling me names and cursing at me, but I know that in those moments there are no answers.
Matthew is lost in Matthew. I wish that Matthew was surrounded by people all day long who modeled how to have self control. I wish that Matthew was surrounded by people who modeled using nice language, and appropriate social interactions. I fear that Matthew is responding and getting more and more lost because of the negative interactions he witnesses daily. I worry that he has come home and told me yesterday and today that he saw his friend be restrained. That his friend had a crisis. That crisis staff was in his room. Today the police were at his school. He asked me if I knew they were there. Were they there for him? Were they watching him?
I worry that he is asking me repeatedly tonight whether the police are coming. I worry that he is asking me whether he is going back to the psychiatric hospital. Are these questions his way of telling me he needs help? Are these questions his way of expressing that he feels out of control? Are these questions just questions?
I have no answers. I have my gut instinct, I have my hope and my faith and I have my worries. I am hoping that Matthew is going through a time of testing his new classroom. he has been in this room about 3 weeks, so it makes sense to test the staff to see what will happen. I am hoping that Matthew is just going through a pre thanksgiving bump in the road. This is his rough time. Halloween through Hanukah, these are the challenging months for my boy.
I am hoping that with love, consistency, and patience that we can get through this, and take a few steps away from the edge of the cliff. I am hoping that his teacher and I can find our way together, I will forge ahead and try to build a relationship with her even though my entire being wants my boy out of this school. I will forge ahead because for now she is the teacher who is spending 6 hours a day with my son, and for those 6 hours she is at the helm of the ship, and she is balancing him on the edge of the cliff. I will forge ahead because hopefully she is the person who can be my partner in finding him a more stable educational setting for the future. I will forge ahead, because for now I have no choice.
This is the placement the district is offering, it is the only one they are putting on the table, and so for now, I can only forge ahead towards the future.
Wednesday, November 19, 2014
Saturday, November 15, 2014
Life in the trenches
Last night I read an article about a family in Canada who had to surrender their son with Fetal Alcohol Syndrome to the equivalent of CPS in order for the child to be placed in a group home with the appropriate supports. A few years ago, I would have been horrified by such a story. I would have blamed the family. I would have assumed they hadn't tried hard enough. I would have done all of this as a way to protect myself from the fact that living with FASD is really hard. I would have done all of this as a way to protect myself from the reality that it may get even harder as time goes on.
This week, things got harder and they got more real for us. What happened doesn't really matter, because truly it could have been any situation with Matthew. Essentially life happened, Matthew got mad. This time Matthew was with his after school babysitter when she placed a demand on him that he get ready to come and meet me, and so this time the situation wasn't just between me and Matthew and the boys.
While I may have decided it was unsafe to take an angry Matthew in the car until he calmed down, the sitter decided to have Matthew get in the car and she drove to meet me. The entire way he was threatening her. His language was horrible. He threatened physical assault, and he raged throughout the 10 minute drive. When I met up with them I was met with a fuming Matthew. He raged at me and threatened to hit me.
We met at a local day care center so that I could get my boys and the sitter could pick up her nephew, and so I did my best to keep calm and just try to get us away from the child care center, in my mind that was of the upmost importance. Matthew cursed, I tried to remind him to be quiet as little children were around. Matthew waved his fist at me, I tried to remind him to calm down. Matthew punched me in the back.
At that point the sitter called 911.
I wouldn't have made the call to 911 at that point, not because I think what she did was wrong, I don't, but more because what I have realized is that there is nothing the police can do to help us. Matthew typically calms down soon after the police are called, so that is a benefit, however then we have to stay and fill out lots of paperwork, and we talk through with Matthew what he can do differently next time, but then the next time comes and Matthew gets just as angry, and forgets all we have talked about.
This time however the police were more real with Matthew. I'm not sure if it is because this incident took place in public or because Matthew had physically threatened a non family member or why this time the police were more focused with Matthew on what could happen in the future, but I do know that this was a wake up call for me. One day, it is likely that I am going to see my son interact with the police and I am not going to have the control over the outcome. Read that sentence again.....focus on it and pray I am wrong. I hope nothing more than to be wrong about this prediction. However, given Matthew's rages and his size and his mental health issues, it is becoming more and more a reality to me that my son will likely end up interacting with the police at some time in his adult life. All I can do is hope and pray that the officers understand that at the root of life Matthew is a good boy.
This week, things got harder and they got more real for us. What happened doesn't really matter, because truly it could have been any situation with Matthew. Essentially life happened, Matthew got mad. This time Matthew was with his after school babysitter when she placed a demand on him that he get ready to come and meet me, and so this time the situation wasn't just between me and Matthew and the boys.
While I may have decided it was unsafe to take an angry Matthew in the car until he calmed down, the sitter decided to have Matthew get in the car and she drove to meet me. The entire way he was threatening her. His language was horrible. He threatened physical assault, and he raged throughout the 10 minute drive. When I met up with them I was met with a fuming Matthew. He raged at me and threatened to hit me.
We met at a local day care center so that I could get my boys and the sitter could pick up her nephew, and so I did my best to keep calm and just try to get us away from the child care center, in my mind that was of the upmost importance. Matthew cursed, I tried to remind him to be quiet as little children were around. Matthew waved his fist at me, I tried to remind him to calm down. Matthew punched me in the back.
At that point the sitter called 911.
I wouldn't have made the call to 911 at that point, not because I think what she did was wrong, I don't, but more because what I have realized is that there is nothing the police can do to help us. Matthew typically calms down soon after the police are called, so that is a benefit, however then we have to stay and fill out lots of paperwork, and we talk through with Matthew what he can do differently next time, but then the next time comes and Matthew gets just as angry, and forgets all we have talked about.
This time however the police were more real with Matthew. I'm not sure if it is because this incident took place in public or because Matthew had physically threatened a non family member or why this time the police were more focused with Matthew on what could happen in the future, but I do know that this was a wake up call for me. One day, it is likely that I am going to see my son interact with the police and I am not going to have the control over the outcome. Read that sentence again.....focus on it and pray I am wrong. I hope nothing more than to be wrong about this prediction. However, given Matthew's rages and his size and his mental health issues, it is becoming more and more a reality to me that my son will likely end up interacting with the police at some time in his adult life. All I can do is hope and pray that the officers understand that at the root of life Matthew is a good boy.
Sunday, November 9, 2014
Don't take normal for granted
I am not sure if it is easier or harder on those rare times when I have a break from our normal world and get a glimpse into the world of parenting typical children. This weekend I spent a lot of time in the world of typical parents, and typical children and in that world I found it oddly uncomfortable and awesome all at the same time.
My weekend started off with plans to go to First Friday Shabbat at Temple because they were celebrating the November birthdays and Jacob was born November 1. On the way there, the boys were fighting in the car. Likely I should have just gone home at that point, but I was in need of some Shabbat peace and calm and so I pushed on to get us to services. Sadly, no sooner did we walk into the social hall then Matthew realized that he could not sit where he had planned, and he lost his mind.
It is a very alienating feeling to be in a Temple filled with over 100 people and have no one offer help. He was screaming and cursing and saying horrible things and it felt like the world was watching, but no one stepped forward to help or to talk to him. We eventually drove home before services, Matthew was aggressive and cursing the entire drive, and then as soon as we drove into the driveway he immediately calmed and quickly fell asleep. Apparently, huge public tantrums are exhausting.
At this point I had 45 minutes before a babysitter was coming so that I could go out and hang with some mom friends. As I left my house just 45 minutes after the tantrum, I entered an abyss of normalcy. The moms talked about parenting, school, homework, PTA, and just other mom stuff. There was no talk of tantrums, no mention of the challenges I had survived just mere hours before, it was as if I just became a typical mom hanging out with other mom friends. It was relaxing, and rewarding to just chat about the simple things in life.
Then on Saturday I took 4 of Jacob's friends to a SUNY Albany football game. It was Jacob's wish to have a day just with him, me and his friends. He was insistent that David and Matthew not be with us, so that he could just have a special day. During the 3 hour football game my emotions ran the gamut.......from gushing at Jacob and his friends, to sadness that I did not get the opportunity to have these moments with Matthew and David. From giggling as I listened to 7 and 8 year olds chatter about everything from Justin Bieber to how many gallons of water are in the ocean, to longing for a time that I could share these moment with all of my boys and their friends. I would give my right arm for Matthew to have one friend who we could take somewhere. I would give anything for David to have a buddy to be with. I know it would mean the world to each of them and it would offer that completeness for all of us.
There is something magical about joining a world of 7 and 8 year olds. As a group these boys were a riot! I don't think they really watched more than 3 minutes of the game, but in their own minds they could give you a play by play! They spent the game racing each other, playing imaginary football, (I totally loved watching them do an imaginary kick off, and an imaginary complete pass, they were so in sync with each other that it was hard to believe they didn't have a real football in their hands.) At one point they found another group of boys and they played a pick up game of football against them and then proceeded to challenge this older group of boys in all sorts of races and challenges.
If you had seen me at any point throughout the night you would have seen the goofiest smile on my face. This was a night of parenting that I had dreamed about. This is what I dreamed of as I filled out my adoption application three times. This is what I dreamed of when I wrote my "Dear Birthmom" letter, and this is what I dreamed of on the day that I adopted each of my boys. I had always imagined that we would be "the fun house!" The house where the kids came to hang out, and the house where all the fun happened.
As we left the football game, the boys high fived the SUNY Albany players, and one by one the boys were handed football gloves that the players wore during the game. As if the night had not been awesome enough, THIS was the icing on the cake! This was the moment that made the night perfect! Five little boys treasured these gloves like they were gold. They retold the story of how they each got their gloves over and over again in the car. They marveled at how amazing it was that the players could just "give away their gloves". To them the football gloves were the crowning glory on an already magical night, and to me it was like the cherry on the top of a sundae. It was the extra sweetness, the magical touch. It was a bit of the magic that we could now take home and hang on to forever.
On the way home from the game we picked up Matthew and David, and I could feel my chariot turning back into a pumpkin. I begged Matthew to just sit quietly in the car. I let him sit in the front with the hope that he would just focus on me and let Jacob have his last few moments of awesome, but Matthew is Matthew, and impulse control is not something he excels at. For Jacob and I we could feel our time in the "land of typical" slipping away.....Jacob explained to his friends what a respite worker is, and why Matthew had been with his respite worker while we were at the game. He also explained why David was talking so fast........as Jacob put it, "there are 2 David's, one who is quiet, and one who is loud. The loud David is there first in the morning, until he takes his medicine, then the quiet David comes, and then at night the loud David comes back. Loud David is funny, but talks REALLY fast, he asks lots of questions, but doesn't listen too much. Quiet David is calm, but also really quiet."
It was neat to hear Jacob's take on his brothers and to see him explain it all to his friends. It was interesting to hear him talk about it in front of Matthew and David and they didn't seem phased by what he was saying at all. For Jacob's friends, these explanations were just explanations....it didn't lead to other questions, it was simply statements of fact that were quickly accepted. After dropping everyone off at their houses, we returned home and everyone went right to sleep.....except me......I spent time basking in the happiness of the night. I wish I had more moments of typical, and easygoing, on the other hand, when I get those moments they have such an impact on me, so maybe it is good that they are infrequent, maybe it makes them more special.
Tonight I had the opportunity to do David's first ever long term homework project! His assignment was to make a poster with facts all about the state of Florida! Florida is David's favorite state because Disney World is in Florida. Together he and I searched for all sorts of Florida facts.....the state flag, state tree, state bird.....you name it, and we researched it!
I loved doing this simple project with David. I loved getting a glimpse inside his academic world. David is a hard worker. He is inquisitive, and dedicated. This project had a list of questions to answer, and he was determined to find the answer to each question. I got to watch him type in the questions, and read through the answers. We then worked together to write out all of the answers on the poster board. Some of the words David was willing and eager to write, and other times he insisted that I do the writing. While I know that this project was not exactly like doing it alongside a typical 5th grader, it was as close as I have come to having the parental experience of doing a project with my child. I am so proud of the work he did, and the effort he put into making his Florida poster! I am so happy to have had what I hope is the first of many homework assignments to tackle with David, because even just this glimpse into normalcy was fun and was part of what I dreamed of as I ventured into the world of parenthood.
Childhood is made up of a combination of big moments and small moments, big successes and small successes. I feel like this weekend I had lots of small moments that felt like huge successes! I have alternated between loving each of these small moments and feeling angry because we don't get more of these small childhood moments in the life of my boys. Even something as simple as a playdate is not simple for us. For Jacob to have a playdate at our house, I have to ensure that Matthew is somewhere else because Matthew simply cannot tolerate Jacob having a friend over.
For many years I thought I would just work with Matthew and teach him how to behave when Jacob has a play date, but in reality, this is not a skill that Matthew is showing success with, and therefor for the sake of Jacob, his friend, and my sanity, we will simply plan play dates when Matthew is with his respite worker.
I will also continue to plan more big moments and small moments, and I will try to remember that parenthood is a marathon not a sprint. What I can hope is that when the boys are grown and we are sitting around a table together, they will each have enough small and big moment memories to look back on when they felt like they had enough of me and my love and attention. As for me, I can hope that I can continue to get moments in the "land of typical parenting", but i will also try to remember all of the things that make parenting children with special needs memorable. After all, just this week I got to celebrate David reaching out to hold my hand at CVS. When you wait 10 years for this moment, it is extra special.....and all of the moms in "the land of typical parenting" likely won't get to celebrate a little moment quite as special as that was for me~!
My weekend started off with plans to go to First Friday Shabbat at Temple because they were celebrating the November birthdays and Jacob was born November 1. On the way there, the boys were fighting in the car. Likely I should have just gone home at that point, but I was in need of some Shabbat peace and calm and so I pushed on to get us to services. Sadly, no sooner did we walk into the social hall then Matthew realized that he could not sit where he had planned, and he lost his mind.
It is a very alienating feeling to be in a Temple filled with over 100 people and have no one offer help. He was screaming and cursing and saying horrible things and it felt like the world was watching, but no one stepped forward to help or to talk to him. We eventually drove home before services, Matthew was aggressive and cursing the entire drive, and then as soon as we drove into the driveway he immediately calmed and quickly fell asleep. Apparently, huge public tantrums are exhausting.
At this point I had 45 minutes before a babysitter was coming so that I could go out and hang with some mom friends. As I left my house just 45 minutes after the tantrum, I entered an abyss of normalcy. The moms talked about parenting, school, homework, PTA, and just other mom stuff. There was no talk of tantrums, no mention of the challenges I had survived just mere hours before, it was as if I just became a typical mom hanging out with other mom friends. It was relaxing, and rewarding to just chat about the simple things in life.
Then on Saturday I took 4 of Jacob's friends to a SUNY Albany football game. It was Jacob's wish to have a day just with him, me and his friends. He was insistent that David and Matthew not be with us, so that he could just have a special day. During the 3 hour football game my emotions ran the gamut.......from gushing at Jacob and his friends, to sadness that I did not get the opportunity to have these moments with Matthew and David. From giggling as I listened to 7 and 8 year olds chatter about everything from Justin Bieber to how many gallons of water are in the ocean, to longing for a time that I could share these moment with all of my boys and their friends. I would give my right arm for Matthew to have one friend who we could take somewhere. I would give anything for David to have a buddy to be with. I know it would mean the world to each of them and it would offer that completeness for all of us.
There is something magical about joining a world of 7 and 8 year olds. As a group these boys were a riot! I don't think they really watched more than 3 minutes of the game, but in their own minds they could give you a play by play! They spent the game racing each other, playing imaginary football, (I totally loved watching them do an imaginary kick off, and an imaginary complete pass, they were so in sync with each other that it was hard to believe they didn't have a real football in their hands.) At one point they found another group of boys and they played a pick up game of football against them and then proceeded to challenge this older group of boys in all sorts of races and challenges.
If you had seen me at any point throughout the night you would have seen the goofiest smile on my face. This was a night of parenting that I had dreamed about. This is what I dreamed of as I filled out my adoption application three times. This is what I dreamed of when I wrote my "Dear Birthmom" letter, and this is what I dreamed of on the day that I adopted each of my boys. I had always imagined that we would be "the fun house!" The house where the kids came to hang out, and the house where all the fun happened.
As we left the football game, the boys high fived the SUNY Albany players, and one by one the boys were handed football gloves that the players wore during the game. As if the night had not been awesome enough, THIS was the icing on the cake! This was the moment that made the night perfect! Five little boys treasured these gloves like they were gold. They retold the story of how they each got their gloves over and over again in the car. They marveled at how amazing it was that the players could just "give away their gloves". To them the football gloves were the crowning glory on an already magical night, and to me it was like the cherry on the top of a sundae. It was the extra sweetness, the magical touch. It was a bit of the magic that we could now take home and hang on to forever.
On the way home from the game we picked up Matthew and David, and I could feel my chariot turning back into a pumpkin. I begged Matthew to just sit quietly in the car. I let him sit in the front with the hope that he would just focus on me and let Jacob have his last few moments of awesome, but Matthew is Matthew, and impulse control is not something he excels at. For Jacob and I we could feel our time in the "land of typical" slipping away.....Jacob explained to his friends what a respite worker is, and why Matthew had been with his respite worker while we were at the game. He also explained why David was talking so fast........as Jacob put it, "there are 2 David's, one who is quiet, and one who is loud. The loud David is there first in the morning, until he takes his medicine, then the quiet David comes, and then at night the loud David comes back. Loud David is funny, but talks REALLY fast, he asks lots of questions, but doesn't listen too much. Quiet David is calm, but also really quiet."
It was neat to hear Jacob's take on his brothers and to see him explain it all to his friends. It was interesting to hear him talk about it in front of Matthew and David and they didn't seem phased by what he was saying at all. For Jacob's friends, these explanations were just explanations....it didn't lead to other questions, it was simply statements of fact that were quickly accepted. After dropping everyone off at their houses, we returned home and everyone went right to sleep.....except me......I spent time basking in the happiness of the night. I wish I had more moments of typical, and easygoing, on the other hand, when I get those moments they have such an impact on me, so maybe it is good that they are infrequent, maybe it makes them more special.
Tonight I had the opportunity to do David's first ever long term homework project! His assignment was to make a poster with facts all about the state of Florida! Florida is David's favorite state because Disney World is in Florida. Together he and I searched for all sorts of Florida facts.....the state flag, state tree, state bird.....you name it, and we researched it!
I loved doing this simple project with David. I loved getting a glimpse inside his academic world. David is a hard worker. He is inquisitive, and dedicated. This project had a list of questions to answer, and he was determined to find the answer to each question. I got to watch him type in the questions, and read through the answers. We then worked together to write out all of the answers on the poster board. Some of the words David was willing and eager to write, and other times he insisted that I do the writing. While I know that this project was not exactly like doing it alongside a typical 5th grader, it was as close as I have come to having the parental experience of doing a project with my child. I am so proud of the work he did, and the effort he put into making his Florida poster! I am so happy to have had what I hope is the first of many homework assignments to tackle with David, because even just this glimpse into normalcy was fun and was part of what I dreamed of as I ventured into the world of parenthood.
Childhood is made up of a combination of big moments and small moments, big successes and small successes. I feel like this weekend I had lots of small moments that felt like huge successes! I have alternated between loving each of these small moments and feeling angry because we don't get more of these small childhood moments in the life of my boys. Even something as simple as a playdate is not simple for us. For Jacob to have a playdate at our house, I have to ensure that Matthew is somewhere else because Matthew simply cannot tolerate Jacob having a friend over.
For many years I thought I would just work with Matthew and teach him how to behave when Jacob has a play date, but in reality, this is not a skill that Matthew is showing success with, and therefor for the sake of Jacob, his friend, and my sanity, we will simply plan play dates when Matthew is with his respite worker.
I will also continue to plan more big moments and small moments, and I will try to remember that parenthood is a marathon not a sprint. What I can hope is that when the boys are grown and we are sitting around a table together, they will each have enough small and big moment memories to look back on when they felt like they had enough of me and my love and attention. As for me, I can hope that I can continue to get moments in the "land of typical parenting", but i will also try to remember all of the things that make parenting children with special needs memorable. After all, just this week I got to celebrate David reaching out to hold my hand at CVS. When you wait 10 years for this moment, it is extra special.....and all of the moms in "the land of typical parenting" likely won't get to celebrate a little moment quite as special as that was for me~!
Sunday, October 5, 2014
My mental health
There has been so much going on recently and it has been really hard to organize my thoughts.....with all that I share about my boys, it is only fair that I share about myself as well. I am an adult who has struggled all her adult life with depression. I have found a medication that changes my world. I am one of the worlds best masqueraders, you would likely never know when, on the inside, I am falling apart. Unfortunately, for the month of August, I was living a nightmare. The pharmacy had made a mistake with my anti depressant and they had given me half of my regular dosage. I was a mess. It was all I could do to get to work, and get home and make dinner each night and get the boys to bed. I was living life with tears bubbling up in my throat but was too ashamed to tell anyone.
Finally when it was time to renew my prescription, I went to the pharmacy, assuming that I was feeling this way due to them giving me a generic brand that didn't work, and in tears begged them please to give me a different brand. An awesome pharmacist finally did some research and found out that I had been taking half of my regular dose for the past month.
Half of my regular dose was the difference between living in hell and living in happiness. Half of my regular dose cost me a month of summer. Half of my regular dose meant that i went through life, because as parents that is what we have to do, but there was a dark cloud covering every moment. Half of my regular dose meant that I was short with my kids, it meant that I didn't have the strength or the patience to deal with every issue that came up. It also meant that in many ways my boys were feeding off of my shortness. It meant that they were living with a mom who didnt have all of the patience she needed to be her best. It meant that I spent my nights with tears in my throat and no one to tell.
Half of my regular dose also explains my sobbing, true sobbing, when i picked up the boys from summer camp....you see, I am typically someone who might shed tears, but sobbing, is highly unusual. I still can't get over all that David accomplished at camp, and the amazing fun Matthew had, but in rewatching the video, while it is awesome, sobbing now seems like an insane reaction!
What this has taught me is that I have to listen to my body. I deserve to live in happiness, and my boys require that I live life at my best. Given that, I have to check all medications that we are given from the pharmacy to make sure that they are correct, but I also need to listen to my body. I will know now that when I can't get off the couch, or can't keep it together, that I need to be in contact with my Doctor. Not only do my boys deserve the best me, but I deserve the best me, and thankfully, while I am person who is prone to depression, I am not a person living with depression. I am a person who is thriving with depression that bubbles under the surface, when I don't have the support of all that modern medicine has to offer.
I have worried about writing this post for a few weeks now because we all know that impact of social media. It is however I have decided, unfair of me to share so much of our story and yet hide this piece. Some may say, having these 3 boys could make anyone struggle with depression, however I have struggled with depression since I was in high school. I am one of the lucky ones, medications work for me and they have truly changed my life.
Finally when it was time to renew my prescription, I went to the pharmacy, assuming that I was feeling this way due to them giving me a generic brand that didn't work, and in tears begged them please to give me a different brand. An awesome pharmacist finally did some research and found out that I had been taking half of my regular dose for the past month.
Half of my regular dose was the difference between living in hell and living in happiness. Half of my regular dose cost me a month of summer. Half of my regular dose meant that i went through life, because as parents that is what we have to do, but there was a dark cloud covering every moment. Half of my regular dose meant that I was short with my kids, it meant that I didn't have the strength or the patience to deal with every issue that came up. It also meant that in many ways my boys were feeding off of my shortness. It meant that they were living with a mom who didnt have all of the patience she needed to be her best. It meant that I spent my nights with tears in my throat and no one to tell.
Half of my regular dose also explains my sobbing, true sobbing, when i picked up the boys from summer camp....you see, I am typically someone who might shed tears, but sobbing, is highly unusual. I still can't get over all that David accomplished at camp, and the amazing fun Matthew had, but in rewatching the video, while it is awesome, sobbing now seems like an insane reaction!
What this has taught me is that I have to listen to my body. I deserve to live in happiness, and my boys require that I live life at my best. Given that, I have to check all medications that we are given from the pharmacy to make sure that they are correct, but I also need to listen to my body. I will know now that when I can't get off the couch, or can't keep it together, that I need to be in contact with my Doctor. Not only do my boys deserve the best me, but I deserve the best me, and thankfully, while I am person who is prone to depression, I am not a person living with depression. I am a person who is thriving with depression that bubbles under the surface, when I don't have the support of all that modern medicine has to offer.
I have worried about writing this post for a few weeks now because we all know that impact of social media. It is however I have decided, unfair of me to share so much of our story and yet hide this piece. Some may say, having these 3 boys could make anyone struggle with depression, however I have struggled with depression since I was in high school. I am one of the lucky ones, medications work for me and they have truly changed my life.
Monday, August 11, 2014
You never know where help will come from
Tonight is the night that Robin Williams passed away. Actually, he didn't really pass away....the reports are saying he committed suicide. Sadly, one of my first thoughts upon hearing of his suicide was "I wonder if this will bring attention to the mental health issues faced by so many in our country." Sadly, I fear this will not be the case. I fear that so many will miss Robin Williams, and for a few days we will hear of his loss, but over a few days it will become old news.
At this time, we are also seeing so many people dump buckets of ice water over their heads in support of research for ALS. ALS is a debilitating disease, a horrible killer. A disease that needs to be studied. I wonder though, if the challenge was to dump ice water on your head in support of those studying mental illness would people do it?
I would like to think that we would see this an ice challenge in support of those afflicted with mental illness, but I can't say I am sure that we would really see this going viral.
Matthew is on edge recently. I thought it was just me who was seeing it, and then a friend pointed it out at the pool. He will never know how much him pointing it out helped me. It is so isolating to be Matthew's mom. To never know when he will blow up, and when things will be "no big deal" to Matthew. On Sunday he was pacing at the pool, rather than swimming, and I was watching him and worrying, and then my friend shared his concern. It was enough for me to know that my friend knows the "real matthew", he sees the "real Matthew" and he is there to support Matthew and me.
Tonight I dropped Jacob at football, and then I took David and Matthew to Walmart to shop for school supplies. It was a quick trip and Matthew was thirsty and apparently the water fountain at Walmart was broken. This was enough to have Matthew on edge, but he seemed to be coping as we busily looked for supplies. When we were ready to pay we searched for a short line. Matthew was getting more and more edgy, and more and more thirsty, and I just needed us to get out of the store. Just when I thought it was my turn, a lady with a full cart came in front of us. I almost said something, but decided we could wait. Of course, I had Matthew with me, so he screamed out, "We were next, no budging!"
As I was reprimanding Matthew, the lady quickly shared that her daughter had been holding her spot, and that she was in line. I was beyond thankful that she responded as she did, because so often Matthew is told by others that "it's ok". It is not ok however to be rude to others. It can lead to horrible, horrible situations. If I don't teach Matthew this lesson now, I fear what will happen. What fights will he get in? Who will he upset? What will the consequences be?
This woman was the perfect balance of factual- her daughter had been holding her place, and calm, so that I was able to redirect Matthew. We actually ended up bonding over the fact that we were both doing some quick shopping while our kids were at football practice, and we were able to allow Matthew's rudeness to blow over. He apologized to her,and in her wisdom she said that she accepted his apology. Again, she never said it was "ok", just that she accepted the apology.
I thought we were all set, and that Matthew truly understood that he had overreacted tonight at Walmart until his "swiss cheese brain" came into action tonight at bedtime. He was mad because it was bed time. He was mad because I was making him change his shirt, and he announced that he was mad at the stupid lady for budging. All of the talking about how she WAS in line. All of the talking about how no matter what, we are not rude to strangers. All of the apologizing.....none of it mattered. Even though he seemed to understand, once he was mad again tonight, his anger triggered his primal misunderstanding of tonights events. He still does not completely understand why she was ahead of us, and why it was ok, and that he was wrong in being rude.
There is nothing I am going to say to him to make him see it the way the rest of us see it. There is nothing I can do because his response is primal. It is all emotion, and no thought. It is all action, and no restraint. it is likely going to be what does him in. It is what I am working against at all cost, but it is saving someone from himself........that is life's biggest challenge.....
At this time, we are also seeing so many people dump buckets of ice water over their heads in support of research for ALS. ALS is a debilitating disease, a horrible killer. A disease that needs to be studied. I wonder though, if the challenge was to dump ice water on your head in support of those studying mental illness would people do it?
I would like to think that we would see this an ice challenge in support of those afflicted with mental illness, but I can't say I am sure that we would really see this going viral.
Matthew is on edge recently. I thought it was just me who was seeing it, and then a friend pointed it out at the pool. He will never know how much him pointing it out helped me. It is so isolating to be Matthew's mom. To never know when he will blow up, and when things will be "no big deal" to Matthew. On Sunday he was pacing at the pool, rather than swimming, and I was watching him and worrying, and then my friend shared his concern. It was enough for me to know that my friend knows the "real matthew", he sees the "real Matthew" and he is there to support Matthew and me.
Tonight I dropped Jacob at football, and then I took David and Matthew to Walmart to shop for school supplies. It was a quick trip and Matthew was thirsty and apparently the water fountain at Walmart was broken. This was enough to have Matthew on edge, but he seemed to be coping as we busily looked for supplies. When we were ready to pay we searched for a short line. Matthew was getting more and more edgy, and more and more thirsty, and I just needed us to get out of the store. Just when I thought it was my turn, a lady with a full cart came in front of us. I almost said something, but decided we could wait. Of course, I had Matthew with me, so he screamed out, "We were next, no budging!"
As I was reprimanding Matthew, the lady quickly shared that her daughter had been holding her spot, and that she was in line. I was beyond thankful that she responded as she did, because so often Matthew is told by others that "it's ok". It is not ok however to be rude to others. It can lead to horrible, horrible situations. If I don't teach Matthew this lesson now, I fear what will happen. What fights will he get in? Who will he upset? What will the consequences be?
This woman was the perfect balance of factual- her daughter had been holding her place, and calm, so that I was able to redirect Matthew. We actually ended up bonding over the fact that we were both doing some quick shopping while our kids were at football practice, and we were able to allow Matthew's rudeness to blow over. He apologized to her,and in her wisdom she said that she accepted his apology. Again, she never said it was "ok", just that she accepted the apology.
I thought we were all set, and that Matthew truly understood that he had overreacted tonight at Walmart until his "swiss cheese brain" came into action tonight at bedtime. He was mad because it was bed time. He was mad because I was making him change his shirt, and he announced that he was mad at the stupid lady for budging. All of the talking about how she WAS in line. All of the talking about how no matter what, we are not rude to strangers. All of the apologizing.....none of it mattered. Even though he seemed to understand, once he was mad again tonight, his anger triggered his primal misunderstanding of tonights events. He still does not completely understand why she was ahead of us, and why it was ok, and that he was wrong in being rude.
There is nothing I am going to say to him to make him see it the way the rest of us see it. There is nothing I can do because his response is primal. It is all emotion, and no thought. It is all action, and no restraint. it is likely going to be what does him in. It is what I am working against at all cost, but it is saving someone from himself........that is life's biggest challenge.....
Sunday, July 27, 2014
Emotions
I am a true mastermind at hiding my emotions. I can be feeling lower than low, and almost no one would know. No matter how many times I hear things like, "these boys are lucky to have you", or " you do so much for your boys", the comments that reverberate in my head are things I have heard like "you shouldn't have adopted so many kids if you couldn't take care of them", or " all they need is more structure and discipline".
Recently, I have been feeling very much alone. One of the things that struck me the other night after a rough bedtime, is that I have no one to "tag out" to. There is no one here who I can really lean on and say, "they are yours, I am going to the grocery store", or "they are yours, I am going for a walk". Sure, we have friends and we have grandparents, but no matter how amazing these people are, the buck stops with me. They are mine. I think for me that is the hardest thing. The discipline is mine. The good is mine. The hard is mine. The bills are mine. It is all mine.
That is truly exhausting.
I have a bill I am working on paying, and the organization that I owe suggested that I call someone for help. While I am sure that I could make this phone call, that is simply not how I function. I am a strong, independent person who believes that it is up to me to fulfill all of my personal responsibilities. And the blessing is, that this is a bill I can pay and a bill I will pay. The weakness is that this is a bill that I could pay with a few months of lead time. It is not a bill I can pay right this moment. For all people, or at least for most people I know, there are bills that are paid immediately- mortgage, credit cards, car payments, insurance, child care. There are bills that are paid quickly- cable, electric, medical bills. And there are bills that are paid as quickly as possible- memberships,dues and the other extras in life.
As a single mom, I am very fiscally responsible. I have to be. There is no one else who is going to take care of my bills. There is no fairy who is paying for us to live. I take great pride in this. I take great pride in being the person who can take my kids out for a treat, and I take great pride in teaching my children, that every dollar has a value and if we spend a dollar in one place, we will not have it to spend somewhere else. At times, this has led to some humorous interactions. I was trying to teach Matthew the value of money and I explained it to him by telling him that my credit card allowed me to spend $100 every week, and that I could only spend the $100 once. Unfortunately, he was listening and realized at the grocery store that I was trying to spend $110 on groceries and he panicked and screamed at me that I couldn't use my credit card....as my face turned red, I explained to the cashier that of course I could use the credit card, and I begged Matthew to please be quiet and told him I would explain more in the car.
The hardest thing for me is to ask for help or to admit that I am struggling. As a teenager I struggled a lot with depression. It was very hard to be a teenager who loved working with children and to have my ovaries removed and along with them my possibility for having my own children. I thought that was the worst thing I would cope with.
Right now however, I am struggling with the fact that while I have children, I have children who are not allowing me the "typical" parenting experience. Even with Jacob, I have to constantly monitor his development. I made a choice to send Jacob to summer camp for the most of the summer rather than to send him to summer school. I felt like he needed time to just be a kid, and his summer school was only a short 3 hours, 3 days per week, and I really didn't have any great child care options for him. So I decided that this summer I would focus on him socially and choose camp over summer school.
Given this choice, he is receiving very minimal speech therapy. I am now listening to him regress and struggle with speech all while hearing his friends communicate clearly. He struggles with him/her, he struggles with before/after, and he struggles with other very basic concepts for an almost 2nd grader.When he is talking to me, I am struggling to understand him when I cannot see his mouth and get a sense of what he is trying to tell me. I am sure that a lot of this will be worked on again come September in speech, and I am equally sure that most people are not noticing these changes, however I am his mom, and to me these changes are very visible. Equally as visible to me are the missing play date opportunities, and the solo play Jacob participates in at camp. It is hard to be at camp and to see your child sitting alone, and playing mostly alone. I am sure that this is not how he is most of the time, but when I see it, it hits hard. I think Jacob is a child who enjoys a combination of solo play and peer interaction, but I am always concerned, because I am his mom, that he isn't keeping up or he isn't "fitting in".
Jacob is living a life unlike most of his peers. His life may be more "typical" if he was being raised in an inner city, but for a child living in a calm suburb, Jacob's life is unique, making Jacob unique. In many ways he is wise beyond his years, he has an understanding and a compassion for others that most 7 year olds do not. He is compassionate towards David in ways that I am continually surprised by and proud of. He welcomes Matthew back, even after Matthew has had a fit, in ways that sometimes I am not able to. But, if Jacob was my only child with a disability, I could focus more on his needs, and we would be practicing speech and articulation, and maybe his delays would not be as obvious to me this summer.
I guess what I am trying to express in this post is the thoughts that are going on inside me all of the time. This has been a rough summer for me, and yet if you saw me I would tell you "things are fine". Because, in reality, there are so many people who are dealing with so much worse. I am so lucky to have my 3 boys, and I know that. However, that does not make it easy to raise these 3 boys. Raising them is exhausting. It is "on" all of the time. Our respite has been ridiculously inconsistent, and even when I have respite, I still have 2 children who need me, so it isn't really "respite" for me.
A friend saw me the other day, and I was opening up to her, because she "gets" it as another single mom, and as I was talking Jacob was whining, and she reminded me that my easy child, Jacob, would be someone else's challenge......that statement really put things in perspective. My "easy" child is in a co-taught classroom, receiving speech, OT, and special education services daily. My "easy" child has some significant needs, and yet he almost doesn't register to me as a child with special needs given my other 2 children.
I know that I cannot expect people to recognize my struggles if I don't verbalize them, and I am horrible at verbalizing them, and please know this blog post is not a "cry for help" or anything like that. This blog post is more a "real glimpse into our world, into our every day." It is my way of saying that everyday as a single parent, even with typical kids, would be really hard. When you tag out and say to your partner, "you put the kids to bed, I'm going to the grocery store", remember how easy it is to grocery shop without kids in tow. When you go out for a mom's night, remember how great it is to go out and not come home and pay the sitter. This post is more about reminding people how hard it is to be a parent, any parent, and then an inside glimpse into my life as a single mom raising 3 children with special needs.
Recently, I have been feeling very much alone. One of the things that struck me the other night after a rough bedtime, is that I have no one to "tag out" to. There is no one here who I can really lean on and say, "they are yours, I am going to the grocery store", or "they are yours, I am going for a walk". Sure, we have friends and we have grandparents, but no matter how amazing these people are, the buck stops with me. They are mine. I think for me that is the hardest thing. The discipline is mine. The good is mine. The hard is mine. The bills are mine. It is all mine.
That is truly exhausting.
I have a bill I am working on paying, and the organization that I owe suggested that I call someone for help. While I am sure that I could make this phone call, that is simply not how I function. I am a strong, independent person who believes that it is up to me to fulfill all of my personal responsibilities. And the blessing is, that this is a bill I can pay and a bill I will pay. The weakness is that this is a bill that I could pay with a few months of lead time. It is not a bill I can pay right this moment. For all people, or at least for most people I know, there are bills that are paid immediately- mortgage, credit cards, car payments, insurance, child care. There are bills that are paid quickly- cable, electric, medical bills. And there are bills that are paid as quickly as possible- memberships,dues and the other extras in life.
As a single mom, I am very fiscally responsible. I have to be. There is no one else who is going to take care of my bills. There is no fairy who is paying for us to live. I take great pride in this. I take great pride in being the person who can take my kids out for a treat, and I take great pride in teaching my children, that every dollar has a value and if we spend a dollar in one place, we will not have it to spend somewhere else. At times, this has led to some humorous interactions. I was trying to teach Matthew the value of money and I explained it to him by telling him that my credit card allowed me to spend $100 every week, and that I could only spend the $100 once. Unfortunately, he was listening and realized at the grocery store that I was trying to spend $110 on groceries and he panicked and screamed at me that I couldn't use my credit card....as my face turned red, I explained to the cashier that of course I could use the credit card, and I begged Matthew to please be quiet and told him I would explain more in the car.
The hardest thing for me is to ask for help or to admit that I am struggling. As a teenager I struggled a lot with depression. It was very hard to be a teenager who loved working with children and to have my ovaries removed and along with them my possibility for having my own children. I thought that was the worst thing I would cope with.
Right now however, I am struggling with the fact that while I have children, I have children who are not allowing me the "typical" parenting experience. Even with Jacob, I have to constantly monitor his development. I made a choice to send Jacob to summer camp for the most of the summer rather than to send him to summer school. I felt like he needed time to just be a kid, and his summer school was only a short 3 hours, 3 days per week, and I really didn't have any great child care options for him. So I decided that this summer I would focus on him socially and choose camp over summer school.
Given this choice, he is receiving very minimal speech therapy. I am now listening to him regress and struggle with speech all while hearing his friends communicate clearly. He struggles with him/her, he struggles with before/after, and he struggles with other very basic concepts for an almost 2nd grader.When he is talking to me, I am struggling to understand him when I cannot see his mouth and get a sense of what he is trying to tell me. I am sure that a lot of this will be worked on again come September in speech, and I am equally sure that most people are not noticing these changes, however I am his mom, and to me these changes are very visible. Equally as visible to me are the missing play date opportunities, and the solo play Jacob participates in at camp. It is hard to be at camp and to see your child sitting alone, and playing mostly alone. I am sure that this is not how he is most of the time, but when I see it, it hits hard. I think Jacob is a child who enjoys a combination of solo play and peer interaction, but I am always concerned, because I am his mom, that he isn't keeping up or he isn't "fitting in".
Jacob is living a life unlike most of his peers. His life may be more "typical" if he was being raised in an inner city, but for a child living in a calm suburb, Jacob's life is unique, making Jacob unique. In many ways he is wise beyond his years, he has an understanding and a compassion for others that most 7 year olds do not. He is compassionate towards David in ways that I am continually surprised by and proud of. He welcomes Matthew back, even after Matthew has had a fit, in ways that sometimes I am not able to. But, if Jacob was my only child with a disability, I could focus more on his needs, and we would be practicing speech and articulation, and maybe his delays would not be as obvious to me this summer.
I guess what I am trying to express in this post is the thoughts that are going on inside me all of the time. This has been a rough summer for me, and yet if you saw me I would tell you "things are fine". Because, in reality, there are so many people who are dealing with so much worse. I am so lucky to have my 3 boys, and I know that. However, that does not make it easy to raise these 3 boys. Raising them is exhausting. It is "on" all of the time. Our respite has been ridiculously inconsistent, and even when I have respite, I still have 2 children who need me, so it isn't really "respite" for me.
A friend saw me the other day, and I was opening up to her, because she "gets" it as another single mom, and as I was talking Jacob was whining, and she reminded me that my easy child, Jacob, would be someone else's challenge......that statement really put things in perspective. My "easy" child is in a co-taught classroom, receiving speech, OT, and special education services daily. My "easy" child has some significant needs, and yet he almost doesn't register to me as a child with special needs given my other 2 children.
I know that I cannot expect people to recognize my struggles if I don't verbalize them, and I am horrible at verbalizing them, and please know this blog post is not a "cry for help" or anything like that. This blog post is more a "real glimpse into our world, into our every day." It is my way of saying that everyday as a single parent, even with typical kids, would be really hard. When you tag out and say to your partner, "you put the kids to bed, I'm going to the grocery store", remember how easy it is to grocery shop without kids in tow. When you go out for a mom's night, remember how great it is to go out and not come home and pay the sitter. This post is more about reminding people how hard it is to be a parent, any parent, and then an inside glimpse into my life as a single mom raising 3 children with special needs.
Sunday, July 6, 2014
My boy the Bar Mitzvah
WOW.......I know that all parents and families gush when their child becomes a Bar Mitzvah, and I am sure that I will feel David and Jacob have been incredible when they too reach the magical age of 13 and I celebrate with them at their Bar Mitzvot, but I believe that there is something truly magical about Matthew.
See, Matthew lives life in a magical way....whether you knew Matthew well or not, if you have talked to Matthew in the past year, you were likely invited to attend his Bar Mitzvah. He was so excited, that he was oozing joy and wanted the world to celebrate alongside him.
No matter how many times I tried to explain to him that the world is not invited to anyone's BarMitzvah, I could not get him to contain his joy and allow me to create the guest list. Similarly, even as late as the night of the Bar Mitzvah, he was asking people if they were attending his party. Random people he didn't know, who simply had come to services on Friday night, were asked if they were coming to dinner and to celebrate. Thankfully, the world did not take Matthew up on his offer to attend the party, but the chapel was significantly more full than I think most of us expected on July 4. I was not sure if we would get most of my family to attend given that it was a Friday in July and a holiday weekend, and I was not at all positive that I would have as many friends as ended up coming because July 4 weekend is often a time that people go away. I cannot imagine celebrating this occasion however without each and every person who was in that room because each person has been a part of Matthew's journey.
From our family who was there to greet Matthew within hours of him entering my world, to camp staff who met Matthew as soon as he was allowed to enter New York State, to teachers who worked with me and had no idea I was on the journey to adopt a son, but welcomed him with open arms.....the room was full of love. In addition, all of the people who have cared for Matthew as therapists, respite workers, babysitters, and all of the friends who have stood by me and my parents on the journey of raising Matthew.....the room was simply full of love!
Matthew has always had a passion for Judaism. He has always questioned where God was, and how he makes the world work. He is a child who sang Jewish songs, but could not sing the ABC's. He is a child who knew the Hebrew Alphabet before he could read even 3 letter words. He is a child who has had fits and anger outbursts everywhere, but never, not once, at Temple. It is as if Temple is Matthew's safe place. It is his sanctuary. As such, Matthew is the most pure Matthew, when he is studying Judaism or feeling the love of being Jewish.
Matthew set a high bar for himself as he planned how he would lead his Bar Mitzvah service. I am blessed to be part of a Temple who is experienced and who allows each Bar Mitzvah to guide how much of the service they lead. When Matthew was shown his options, he himself set the bar higher than I think most of us would have set it for him. He wanted to read the Vahavta prayer, and so he was taught it. I thought he should be taught to chant his Torah portion because he is so musical, but the Cantor told me that he has to read it BEFORE he can chant it, and so he learned to read it like all other students.
It wasn't until Thursday night at rehearsal that I saw that Matthew was going to truly read from the Torah. I assumed that he would lay a piece of paper over the Torah and that he would read from this paper. Instead, my son who struggles to read english, read from the Torah- a document that contains no vowels. Imagine reading a foreign language. Now imagine reading it with no vowels. Now imagine reading it with no vowels after only practicing it this way a handful of times and in front of 150 people. This is what Matthew did, and he did it with no errors! I cried, my dad cried, the congregation cried. It was truly a moment that sent shivers down my spine.
This child has lived life on the edge. He has struggled. He has climbed mountains most adults don't climb. He struggles daily to learn. He struggles daily to understand the rules of life, and yet he perseveres. He succeeds! He excels! Sure, he had some Matthew moments during the service, but it wouldn't have been his service without them........upon being given the Challah, bread, after the prayer, he commented that "thankfully, NOW he could eat......" Many times he responded out loud with quips and commentary, but it was funny and it was as only Matthew could be! It was genuine and true and Matthew all the way through!
After the party, which was filled with more love than I ever knew existed, we came home and Matthew opened his presents and cards. This was when for me I got to truly witness the miracle that was his Bar Mitzvah. First, Matthew insisted on reading each and every card. I am still not sure that he understands or appreciates the gifts he received, because to him the cards were so cherished.
As it was midnight, I would have happily rushed through the cards and gone back to them tomorrow, but he read each and every word. What was incredible was to realize that most cards contained the same words and I got to witness his struggles. This same child who had commanded the service and made it appear so effortless, struggled to read each and every card. At the service he read words like "soverign", "advocate", and "kindle", but in each card the words "congratulations", "success" and "special" caused him to stumble. This only proved to me the intense effort that had gone in from Matthew and his teachers to making his Bar Mitzvah the true success it was.
I am Matthew's mom. For years I have wanted nothing more than for Matthew to have his moment. We have had so many years when there was no one to invite to his birthday party. When he has begged for a sleepover or for a friend. We have had so many years of struggle. Matthew needed a day to shine......Matthew has earned a day like he had on Friday for his Bar Mitzvah! This day showed me all that matthew has to offer the world, and all of the people who's lives Matthew has touched! There are not many Matthew Bloom's in this world! he is one of the most generous, kind, caring people I know with a heart of gold. He can be exhausting as I try to care for him and meet his needs, but he can also be hysterical! Friday night was all about all of the amazingness that is Matthew! Friday night Matthew shined! It will be a day that I will never ever forget! My boy is a Bar Mitzvah! My boy is a Jewish Adult! Few have worked as hard as he did to earn this honor! Few have been more deserving! My heart swells with pride, my eyes gleam with respect, my cup overflows with love!
See, Matthew lives life in a magical way....whether you knew Matthew well or not, if you have talked to Matthew in the past year, you were likely invited to attend his Bar Mitzvah. He was so excited, that he was oozing joy and wanted the world to celebrate alongside him.
No matter how many times I tried to explain to him that the world is not invited to anyone's BarMitzvah, I could not get him to contain his joy and allow me to create the guest list. Similarly, even as late as the night of the Bar Mitzvah, he was asking people if they were attending his party. Random people he didn't know, who simply had come to services on Friday night, were asked if they were coming to dinner and to celebrate. Thankfully, the world did not take Matthew up on his offer to attend the party, but the chapel was significantly more full than I think most of us expected on July 4. I was not sure if we would get most of my family to attend given that it was a Friday in July and a holiday weekend, and I was not at all positive that I would have as many friends as ended up coming because July 4 weekend is often a time that people go away. I cannot imagine celebrating this occasion however without each and every person who was in that room because each person has been a part of Matthew's journey.
From our family who was there to greet Matthew within hours of him entering my world, to camp staff who met Matthew as soon as he was allowed to enter New York State, to teachers who worked with me and had no idea I was on the journey to adopt a son, but welcomed him with open arms.....the room was full of love. In addition, all of the people who have cared for Matthew as therapists, respite workers, babysitters, and all of the friends who have stood by me and my parents on the journey of raising Matthew.....the room was simply full of love!
Matthew has always had a passion for Judaism. He has always questioned where God was, and how he makes the world work. He is a child who sang Jewish songs, but could not sing the ABC's. He is a child who knew the Hebrew Alphabet before he could read even 3 letter words. He is a child who has had fits and anger outbursts everywhere, but never, not once, at Temple. It is as if Temple is Matthew's safe place. It is his sanctuary. As such, Matthew is the most pure Matthew, when he is studying Judaism or feeling the love of being Jewish.
Matthew set a high bar for himself as he planned how he would lead his Bar Mitzvah service. I am blessed to be part of a Temple who is experienced and who allows each Bar Mitzvah to guide how much of the service they lead. When Matthew was shown his options, he himself set the bar higher than I think most of us would have set it for him. He wanted to read the Vahavta prayer, and so he was taught it. I thought he should be taught to chant his Torah portion because he is so musical, but the Cantor told me that he has to read it BEFORE he can chant it, and so he learned to read it like all other students.
It wasn't until Thursday night at rehearsal that I saw that Matthew was going to truly read from the Torah. I assumed that he would lay a piece of paper over the Torah and that he would read from this paper. Instead, my son who struggles to read english, read from the Torah- a document that contains no vowels. Imagine reading a foreign language. Now imagine reading it with no vowels. Now imagine reading it with no vowels after only practicing it this way a handful of times and in front of 150 people. This is what Matthew did, and he did it with no errors! I cried, my dad cried, the congregation cried. It was truly a moment that sent shivers down my spine.
This child has lived life on the edge. He has struggled. He has climbed mountains most adults don't climb. He struggles daily to learn. He struggles daily to understand the rules of life, and yet he perseveres. He succeeds! He excels! Sure, he had some Matthew moments during the service, but it wouldn't have been his service without them........upon being given the Challah, bread, after the prayer, he commented that "thankfully, NOW he could eat......" Many times he responded out loud with quips and commentary, but it was funny and it was as only Matthew could be! It was genuine and true and Matthew all the way through!
After the party, which was filled with more love than I ever knew existed, we came home and Matthew opened his presents and cards. This was when for me I got to truly witness the miracle that was his Bar Mitzvah. First, Matthew insisted on reading each and every card. I am still not sure that he understands or appreciates the gifts he received, because to him the cards were so cherished.
As it was midnight, I would have happily rushed through the cards and gone back to them tomorrow, but he read each and every word. What was incredible was to realize that most cards contained the same words and I got to witness his struggles. This same child who had commanded the service and made it appear so effortless, struggled to read each and every card. At the service he read words like "soverign", "advocate", and "kindle", but in each card the words "congratulations", "success" and "special" caused him to stumble. This only proved to me the intense effort that had gone in from Matthew and his teachers to making his Bar Mitzvah the true success it was.
I am Matthew's mom. For years I have wanted nothing more than for Matthew to have his moment. We have had so many years when there was no one to invite to his birthday party. When he has begged for a sleepover or for a friend. We have had so many years of struggle. Matthew needed a day to shine......Matthew has earned a day like he had on Friday for his Bar Mitzvah! This day showed me all that matthew has to offer the world, and all of the people who's lives Matthew has touched! There are not many Matthew Bloom's in this world! he is one of the most generous, kind, caring people I know with a heart of gold. He can be exhausting as I try to care for him and meet his needs, but he can also be hysterical! Friday night was all about all of the amazingness that is Matthew! Friday night Matthew shined! It will be a day that I will never ever forget! My boy is a Bar Mitzvah! My boy is a Jewish Adult! Few have worked as hard as he did to earn this honor! Few have been more deserving! My heart swells with pride, my eyes gleam with respect, my cup overflows with love!
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