I dont know what to do with my sadness, and I am so tired but yet I can't sleep.....I know that I have made the decision that is best for matthew, and for all of us, and I know that matthew needs his meds altered, and I know that by going to the hospital, we will likely end the cycle and matthew will come home healthier, but that doesnt make me less sad.
I miss the nonstop chatter that is matthew.
I miss the nuances, that sometimes make me crazy
I miss the fact that my son is not the healthy boy I thought he would be.
I hate that Matthew struggles.
I hate that matthew has a hard life
I hate that his hard life makes life harder for the other 2 boys and for me.
Why did his brain have to be damaged?
I can only hope that the doctors can help, and that a new mixture of medications and dosages will help Matthew.....but for tonight I am sad, and the house feels a little too quiet without my Matthew.
Friday, April 29, 2011
Wednesday, April 13, 2011
Medicaid Waiver Status for matthew
I am a very proud person- I do not like to accept help, and I feel it is very important that I be an independent person, especially financially. That said, I am the director of a not for profit preschool program, which is another way of saying I work hard for 40 plus hours per week, but there just isnt a lot of money that goes into making my salary!
When I first found out that Matthew was struggling with Developmental issues, I was encouraged to apply for the medicaid waiver, and I was appalled. After all, why would I need medicaid for Matthew? Did someone think I was incapable of paying for Matthew's pullups? medications? etc.... It was explained to me multiple times that the Medicaid waiver was there to offer respite support and to help pay for those expenses that were above and beyond those of a typically develping child. For a while I scoffed at the idea, insistent that I didnt need help, and then when Matthew was 6.5 and still wearing pullups, I decided that it might just be time to further investigate this program.
At that time I was paying for pullups for my 6.5year old and my 5year old and diapers for my 2.5 year old, and I was breaking the bank. In addition Matthew was on a lot of medication, David was on a lot of medication, and I was paying a lot of copays for the 2 of them, and I realized that we were not going to be able to be financially independent with these expenses. Around this time, Matthew began to struggle behaviorally more and it was apparent that I was in need of more help and the other boys were in need of some time without Matthew so that they could decompress from the stress he was adding to our house, and so I decided to look into the Medicaid waiver program.
After lots of waiting, Matthew was approved for the medicaid waiver program and shortly afterwards David was approved as well. I quickly realized that the medicaid waiver was not for me, but it was truly for my boys. When I was not spending hundreds of dollars on diapers and pullups, there was money that I could use for us to do things as a family. When matthew was with his respite provider, I had time with David and Jacob where we could do things just the 3 of us, AND Matthew had time with an adult who was there just for him. It was time that he could do some fun things, and the respite provider could work with him on different skills like proper behavior when he was out in the community, money management skills, playground behavior and more.
Currently, Matthew's medication alone would cost well over $300 per month if I had to pay for it out of pocket, and his doctor expenses would be around $200 per month, in addition, he is still in diapers at night and those would cost an additional $150 per month. Add to this that David's needs are similar, and it simply is too expensive to care for a child with special needs without support.
Sadly, we are now in the process of getting matthew approved for permanent medicaid waiver status, and it is possible that he will not qualify. Matthew is one of the children who easily fall between the cracks in our society. You see, he does not clearly fall into the category of a child with a psychiatric illness, but he also doesnt clearly fall into the category of a child with a developmental illness.
If he was a child with a psychiatric illness, he could receive respite and residential habilitation, but he would not receive the financial benefit of medicaid. As a child with a developmental disorder, he will receive the benefit of respite, residential habilitation and the coverage of medicaid. he has an IQ of 66, but his diagnosis are mood disorder not otherwise specified and Fetal Alcohol. The determination as to whether he qualifies as a child with a permanent developmental disorder requires that we prove that he 1. has a developmental disorder that occurred before the age of 18- he does, he has had support sincehe was 18 months of age. 2. that he is unlikely to outgrow these delays- I would assume that if we were goingto see him outgrowing his needs taht we would be seeing more growth at this point, and him catching up to his peers- sadly the delays are widening as his peers are gaining skills at a fast pace. 3. That his disabilities are developmental in nature and not due to another cause- Matthew was matthew since he was a baby- he has not changed. That said, it took doctors and specialists a long time to determine what disorder Matthew had and so there are a lot of records that give a lot of confusing information- some doctors said matthew was on the autsim spectrum, but as he got older it became very apparent that he wasn't on the autism spectrum. Some doctors have said that Matthew has a mood disorder- that is likely true, however the mood disorder would not cause learning delays and social disabilities.
It is most likely that Matthew has a developmental delay that is due to a brain injury which was caused by alcohol used by his birthmother when he was a fetus. However, now there is no contact with his birthmother, so it is impossible to gather the information that states that she drank while pregnant with Matthew. But, guess what is needed in order to give a firm diagnosis that would qualify Matthew for the Medicaid Waiver? Proof that Matthew's mom drank while she was pregnant with him.
I am so tired of circles and circles of beaurcracy. Matthew deserves the supports that are provided to him through the office of developmental disabilities services. By qualifying for these supports, Matthew has the best opportunity to have his needs met as a teenager and young adult. matthwe will likely need support throughout his life- he will need a job coach, he will need someone to help him with money management, he will need someone to make sure that he is making smart choices and decisions. Qualifying now for the medicaid waiver means that these supports are in place as matthew gets closer to adulthood.
I will continue to do the leg work necessary to try to ensure that Matthew qualifies, but it just seems to me that life should be a little more simplistic- I know that there have to be standards in place that ensure that only people with true needs are being served by federal programs, but truly it seems like we are splitting hairs as we try to determine whether it is a developmental or a psychiatric disability that is affecting a child. Fetal alcohol syndrome leads to both cognitive challenges (developmental disabilities) and mood disorders ( psychiatric disabilities) the question of which came first should not be of prime importance- the question that needs to be asked is how do we help this child and this family to ensure that the child is supported in the best ways possible.
When I first found out that Matthew was struggling with Developmental issues, I was encouraged to apply for the medicaid waiver, and I was appalled. After all, why would I need medicaid for Matthew? Did someone think I was incapable of paying for Matthew's pullups? medications? etc.... It was explained to me multiple times that the Medicaid waiver was there to offer respite support and to help pay for those expenses that were above and beyond those of a typically develping child. For a while I scoffed at the idea, insistent that I didnt need help, and then when Matthew was 6.5 and still wearing pullups, I decided that it might just be time to further investigate this program.
At that time I was paying for pullups for my 6.5year old and my 5year old and diapers for my 2.5 year old, and I was breaking the bank. In addition Matthew was on a lot of medication, David was on a lot of medication, and I was paying a lot of copays for the 2 of them, and I realized that we were not going to be able to be financially independent with these expenses. Around this time, Matthew began to struggle behaviorally more and it was apparent that I was in need of more help and the other boys were in need of some time without Matthew so that they could decompress from the stress he was adding to our house, and so I decided to look into the Medicaid waiver program.
After lots of waiting, Matthew was approved for the medicaid waiver program and shortly afterwards David was approved as well. I quickly realized that the medicaid waiver was not for me, but it was truly for my boys. When I was not spending hundreds of dollars on diapers and pullups, there was money that I could use for us to do things as a family. When matthew was with his respite provider, I had time with David and Jacob where we could do things just the 3 of us, AND Matthew had time with an adult who was there just for him. It was time that he could do some fun things, and the respite provider could work with him on different skills like proper behavior when he was out in the community, money management skills, playground behavior and more.
Currently, Matthew's medication alone would cost well over $300 per month if I had to pay for it out of pocket, and his doctor expenses would be around $200 per month, in addition, he is still in diapers at night and those would cost an additional $150 per month. Add to this that David's needs are similar, and it simply is too expensive to care for a child with special needs without support.
Sadly, we are now in the process of getting matthew approved for permanent medicaid waiver status, and it is possible that he will not qualify. Matthew is one of the children who easily fall between the cracks in our society. You see, he does not clearly fall into the category of a child with a psychiatric illness, but he also doesnt clearly fall into the category of a child with a developmental illness.
If he was a child with a psychiatric illness, he could receive respite and residential habilitation, but he would not receive the financial benefit of medicaid. As a child with a developmental disorder, he will receive the benefit of respite, residential habilitation and the coverage of medicaid. he has an IQ of 66, but his diagnosis are mood disorder not otherwise specified and Fetal Alcohol. The determination as to whether he qualifies as a child with a permanent developmental disorder requires that we prove that he 1. has a developmental disorder that occurred before the age of 18- he does, he has had support sincehe was 18 months of age. 2. that he is unlikely to outgrow these delays- I would assume that if we were goingto see him outgrowing his needs taht we would be seeing more growth at this point, and him catching up to his peers- sadly the delays are widening as his peers are gaining skills at a fast pace. 3. That his disabilities are developmental in nature and not due to another cause- Matthew was matthew since he was a baby- he has not changed. That said, it took doctors and specialists a long time to determine what disorder Matthew had and so there are a lot of records that give a lot of confusing information- some doctors said matthew was on the autsim spectrum, but as he got older it became very apparent that he wasn't on the autism spectrum. Some doctors have said that Matthew has a mood disorder- that is likely true, however the mood disorder would not cause learning delays and social disabilities.
It is most likely that Matthew has a developmental delay that is due to a brain injury which was caused by alcohol used by his birthmother when he was a fetus. However, now there is no contact with his birthmother, so it is impossible to gather the information that states that she drank while pregnant with Matthew. But, guess what is needed in order to give a firm diagnosis that would qualify Matthew for the Medicaid Waiver? Proof that Matthew's mom drank while she was pregnant with him.
I am so tired of circles and circles of beaurcracy. Matthew deserves the supports that are provided to him through the office of developmental disabilities services. By qualifying for these supports, Matthew has the best opportunity to have his needs met as a teenager and young adult. matthwe will likely need support throughout his life- he will need a job coach, he will need someone to help him with money management, he will need someone to make sure that he is making smart choices and decisions. Qualifying now for the medicaid waiver means that these supports are in place as matthew gets closer to adulthood.
I will continue to do the leg work necessary to try to ensure that Matthew qualifies, but it just seems to me that life should be a little more simplistic- I know that there have to be standards in place that ensure that only people with true needs are being served by federal programs, but truly it seems like we are splitting hairs as we try to determine whether it is a developmental or a psychiatric disability that is affecting a child. Fetal alcohol syndrome leads to both cognitive challenges (developmental disabilities) and mood disorders ( psychiatric disabilities) the question of which came first should not be of prime importance- the question that needs to be asked is how do we help this child and this family to ensure that the child is supported in the best ways possible.
15q11.2
That is the name of David's chromosomal disorder. What it means is that a very, very, very tiny duplication was made on the top of David's 15th chromosome. The impact of this duplication ranges from nothing at all to complex developmental disabilities......David is one of the Bloom boys, which basically means he does nothing half way....he has decided to go full force and make sure that he takes full advantage of any and all implications that this duplication can have on his body.
This duplication is known to cause autism like developmental delays, seizures, speech delays and motor delays. Apparently all of the doctors who have seen David who have tried to put their finger on what exactly is the reason for david's delays have all been correct- he has symptoms that appear like autism spectrum disorders but cannot be completely defined as autism spectrum disorder. He has always had speech delays and motor delays, and well the seizures, they have definitely had an impact on him in the past and even though they are now well controlled, they are still occurring infrequently.
What does this mean in the long run for David? Likely that he will continue on his developmental path in life. He will learn, but his learning will be slower and will require a lot of intensive teaching.
he will require time to process information, and to learn new skills. He is medically no more fragile than he was in the past, and thankfully there are no other implications of this duplication than what we are already dealing with,so that is great news.
I am thankful to have an answer to the What question for David, I am trying to make peace with the "why" question....why did this happen? Why did it happen to David? And I am moving forward.....baby steps, but I have stopped obsessing about the name and researching it online...and that has led to me feeling more peace.
This duplication is known to cause autism like developmental delays, seizures, speech delays and motor delays. Apparently all of the doctors who have seen David who have tried to put their finger on what exactly is the reason for david's delays have all been correct- he has symptoms that appear like autism spectrum disorders but cannot be completely defined as autism spectrum disorder. He has always had speech delays and motor delays, and well the seizures, they have definitely had an impact on him in the past and even though they are now well controlled, they are still occurring infrequently.
What does this mean in the long run for David? Likely that he will continue on his developmental path in life. He will learn, but his learning will be slower and will require a lot of intensive teaching.
he will require time to process information, and to learn new skills. He is medically no more fragile than he was in the past, and thankfully there are no other implications of this duplication than what we are already dealing with,so that is great news.
I am thankful to have an answer to the What question for David, I am trying to make peace with the "why" question....why did this happen? Why did it happen to David? And I am moving forward.....baby steps, but I have stopped obsessing about the name and researching it online...and that has led to me feeling more peace.
Tuesday, March 29, 2011
what a day
I am in need of a battery recharge and i am thankful that I am going away overnight in 2 weeks, I only hope that I make it until that wonderful night away. I think what I could really use is to go away one morning and come back after a full night of sleep and a full day of sleep.....maybe then I would feel completely and totally rested. Then again, are any parents truly well rested? I just feel like right now my anxiety is sky high......
David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.
Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.
On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.
I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........
Give him adult diapers for sleeping and collect his urine over a weekend!
As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....
DEPENDS....give the boy DEPENDS.....
what does he think we have been using for months already? Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.
I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )
I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.
I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!
David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.
Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.
On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.
I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........
Give him adult diapers for sleeping and collect his urine over a weekend!
As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....
DEPENDS....give the boy DEPENDS.....
what does he think we have been using for months already? Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.
I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )
I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.
I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!
Friday, March 25, 2011
Growth for the Bloom Boys!
Tonight was the Learning Fair at Matthew's school.......While I always like the idea of going to events at Matthew's or David's school, usually there is a reason we can't go, or, truth be told, I find a reason we can't go.
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
David
I am so excited....which truly seems like an odd emotion based on the news I received today, but excited is how I am feeling, so I am going to go with it!
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
Wednesday, February 2, 2011
not the mom i thought i would be
This parenting thing is for the birds....and yes, as I parent Jacob there are plenty of things that happen that I regret, or I wish I hadn't done, but trust me,there is nothing that a typical child can do that can hold a candle to a child with Fetal Alcohol Syndrome...
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
:
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
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