The Fall of 2005, after Carson's eye surgery and when he began to sit up, was a wonderful time. I was having an easy pregnancy with Cameron and Carson was making progress. It was a slow, but forward motion. The best part was he was just so happy, so easy. He rarely cried or got mad, he was curious about his surroundings, he was finally eating baby food so his color and weight was better. He was still very small for his actual age (at 15 months he was around 12-13 pounds) but he was engaged, curious and happy.
We were still concerned with a few health issues-Carson was prone to projectile vomiting for no discernible reason, he snored like a grown man when he slept and he seemed to sleep more than he should. We were diligent about keeping up with the specialty Doctors that had been with him from birth and we added an Ear, Nose and Throat Doctor based on the advice of our Cardiologist. He had several ear infections that fall and seemed to pick up a bug every time I turned around. We scheduled a sleep study to check for sleep apnea due to high pressures in his lungs. He had large tonsils and adenoids in a narrow airway and it was causing his oxygen levels to fall when asleep as well as occasional sleep apnea. The Doctor wanted to wait and repeat a sleep study to confirm as well as see if his airways would grow as he grew to accommodate the tonsils and adenoids.
In the meantime, around February, March of 2006-right before I was due to have Cameron, Carson started exhibiting many new behaviors. He was hitting his chin over and over, first gently and over time he would hit harder and harder. Soon he was finding toys and objects to use to hit his chin as hard as possible. He was angrier than he had ever been, having meltdowns for seemingly small issues. When once he was fun to take to any store for shopping, content in the stroller or cart, he soon started throwing massive fits-but only in certain stores. At home during his meltdowns he would bang his head on the floor or the wall repeatedly, seeming oblivious to the pain. To be clear, at the beginning, this wasn't happening every day and I had no idea if it was a Downs thing, an early case of the terrible twos or ???? Honestly, I was baffled. As I think back now, I should have been more forceful when I asked his therapists, Doctors and every other professional if these were normal behaviors to really look at them and help find answers. And then, Cameron was born and suddenly I had a newborn and a 22 month old who could not walk, feed himself or even crawl yet. And that was ok-it was the self-injurious behavior, the meltdowns out of nowhere and for no apparent reason-that was what was making me think something wasn't right. During the year he was 2, Carson changed so much it became obvious that we were dealing with something other than the Down Syndrome or the terrible twos. I just wasn't sure what yet.
Friday, July 12, 2013
Monday, January 16, 2012
Thank you if you read my first blog. I was encouraged by your feedback and I was amazed that it really did make me feel better. Just getting the words that had been boiling inside of me out was incredible and there is so much more...so ready or not-here I blog!
First, to respond to a common question from my first blog, "where were the mothers"? They were there, but on the other side of the play set. Imagine a large play set that sort of forms a circle with benches scattered around that circle. From anywhere you can see your children, but you can not always hear them. So, to be fair to the mothers, they did not know and probably thought they were just playing like any other kids. But I was on the same side and could hear everything. The other question: why didn't you say something to the Mothers about it? For a couple of reasons: I was sort of emotionally out of control-tears streaming down my face, voice cracking any time I tried to utter a word. They would have taken one look at me and thought, "CRAZY MOM!!" And I probably would have gotten worked up and said things I shouldn't have said. I know that most of you don't need reminding, but I am only 5 foot tall-with tennis shoes on. These Moms would have beaten me down if so inclined. So to avoid being beaten by fellow suburban Moms, I chickened out, grabbed my family and left.
I am sad a lot. Probably all the time. So to offset that sadness, anxiety, worry-I try to focus on positive things as much as possible. My blog will probably be a mix of the good things and the not so good. This blog I want to focus on two great things: my husband and a group of people that help my husband and I stay strong as a couple.
Finding a babysitter for our two kids is not easy. We do have one fantastic young lady who is away at college most of the time and a couple of possibilities, but for the most part, paying a babysitter who is qualified means paying top dollar and you just can't do that very often. Especially when every dollar I spend translates into therapy dollars for Carson. Night out paying a babysitter=certain amount of hours of therapy. Depressing, right? But, when we moved back to Texas from Kansas 2 years ago, we discovered some wonderful secrets we didn't know about when we lived in Haslet (before Kansas-another blog, another time :)). Respite nights for special needs children and their siblings at local churches. There are many churches in the metroplex that offer monthly respite nights for special needs children and their siblings. Some go all the way up to 21, some end a little earlier, but for our kids-this was the answer to our prayers. You fill out some paperwork, they talk to you to make sure they will have the qualified staff to handle your needs and then you get instructions on making reservations. Most have a call in system on a certain day of the month and it is first come, first serve. The volunteers are comprised of special education teachers, therapists, nurses, pediatricians, church members and the youth ministry. These special volunteers are our angels.
We have three churches that we rotate between. They all fall on different days of the month and there have been times that we have been lucky enough to have three date nights in month! It has been wonderful for my husband and I-raising a child with special needs can be tough on a marriage and you either have to decide to go at it alone and probably break up or be each others rock and get stronger than ever. And that is what these church respite nights have done for us. A bite to eat, usually a walk through Home Depot or Lowe's-never anything too exciting, but an opportunity to be together. Dave is my very best friend-I truly lean on him in every aspect of my life, but a marriage takes work! This gives us the opportunity to do that work that needs to be done.
The impact on the children has been spectacular too! Carson gets excited when we turn into the parking lot of the churches, runs to the door and goes straight to his favorite toy or area. He always has several people there to love on him and play with him and he loves every minute. His social skills have improved by attending and both kids see it as a reward or a treat (as does Mom and Dad). Cameron gets a middle or high school girl all to herself for the whole night-as you can imagine, to a 5 year old girl that is like playing with a princess. And she gets a some of that one-on-one attention that siblings of special needs kids really need, and often do not get enough of. WHOLE nother' topic.
So, thank you to our churches, although there are so many in the metroplex, you just have to do a google search. Thank you: Northwood Church in North Richland Hills, First Baptist Church of Colleyville in Colleyville and United Methodist Church of Coppell in Coppell. The impact you have made on our lives can never be repaid and will never be forgotten.
First, to respond to a common question from my first blog, "where were the mothers"? They were there, but on the other side of the play set. Imagine a large play set that sort of forms a circle with benches scattered around that circle. From anywhere you can see your children, but you can not always hear them. So, to be fair to the mothers, they did not know and probably thought they were just playing like any other kids. But I was on the same side and could hear everything. The other question: why didn't you say something to the Mothers about it? For a couple of reasons: I was sort of emotionally out of control-tears streaming down my face, voice cracking any time I tried to utter a word. They would have taken one look at me and thought, "CRAZY MOM!!" And I probably would have gotten worked up and said things I shouldn't have said. I know that most of you don't need reminding, but I am only 5 foot tall-with tennis shoes on. These Moms would have beaten me down if so inclined. So to avoid being beaten by fellow suburban Moms, I chickened out, grabbed my family and left.
I am sad a lot. Probably all the time. So to offset that sadness, anxiety, worry-I try to focus on positive things as much as possible. My blog will probably be a mix of the good things and the not so good. This blog I want to focus on two great things: my husband and a group of people that help my husband and I stay strong as a couple.
Finding a babysitter for our two kids is not easy. We do have one fantastic young lady who is away at college most of the time and a couple of possibilities, but for the most part, paying a babysitter who is qualified means paying top dollar and you just can't do that very often. Especially when every dollar I spend translates into therapy dollars for Carson. Night out paying a babysitter=certain amount of hours of therapy. Depressing, right? But, when we moved back to Texas from Kansas 2 years ago, we discovered some wonderful secrets we didn't know about when we lived in Haslet (before Kansas-another blog, another time :)). Respite nights for special needs children and their siblings at local churches. There are many churches in the metroplex that offer monthly respite nights for special needs children and their siblings. Some go all the way up to 21, some end a little earlier, but for our kids-this was the answer to our prayers. You fill out some paperwork, they talk to you to make sure they will have the qualified staff to handle your needs and then you get instructions on making reservations. Most have a call in system on a certain day of the month and it is first come, first serve. The volunteers are comprised of special education teachers, therapists, nurses, pediatricians, church members and the youth ministry. These special volunteers are our angels.
We have three churches that we rotate between. They all fall on different days of the month and there have been times that we have been lucky enough to have three date nights in month! It has been wonderful for my husband and I-raising a child with special needs can be tough on a marriage and you either have to decide to go at it alone and probably break up or be each others rock and get stronger than ever. And that is what these church respite nights have done for us. A bite to eat, usually a walk through Home Depot or Lowe's-never anything too exciting, but an opportunity to be together. Dave is my very best friend-I truly lean on him in every aspect of my life, but a marriage takes work! This gives us the opportunity to do that work that needs to be done.
The impact on the children has been spectacular too! Carson gets excited when we turn into the parking lot of the churches, runs to the door and goes straight to his favorite toy or area. He always has several people there to love on him and play with him and he loves every minute. His social skills have improved by attending and both kids see it as a reward or a treat (as does Mom and Dad). Cameron gets a middle or high school girl all to herself for the whole night-as you can imagine, to a 5 year old girl that is like playing with a princess. And she gets a some of that one-on-one attention that siblings of special needs kids really need, and often do not get enough of. WHOLE nother' topic.
So, thank you to our churches, although there are so many in the metroplex, you just have to do a google search. Thank you: Northwood Church in North Richland Hills, First Baptist Church of Colleyville in Colleyville and United Methodist Church of Coppell in Coppell. The impact you have made on our lives can never be repaid and will never be forgotten.
Sunday, January 8, 2012
Bullies come in small packages
This is my first blog. I read them all the time, particularly blogs about motherhood, autism, down syndrome, etc. But I never took the leap to writing my own. When I was younger, I had a diary where I wrote my most intimate thoughts. I suppose this is close to that-I tried to actually start a diary again. First, the old school way where I tried writing longhand in a journal. After about 2 sentences my hand cramped up and I felt like I had a claw instead of a working hand. How did we do all those essays back in school?
Then I thought-computer. Just have a diary on the computer. When I mentioned to my friend my plans, she suggested doing a blog. Mainly to keep friends and family up to date on how my children are doing, but also to possibly reach other parents dealing with the same issues I am. So, I thought I would try it out.
I am a 35 year old mother of two children. Carson, my 7 year old boy, has a dual diagnosis of Autism and Mosaic Down Syndrome. Cameron, my 5 year old girl, is everything you would expect a 5 year old girl to be-both a princess and a tomboy, a Daddy's girl and always eager to please. Cameron, my sweet girl, is a blog topic all her own.
What prompted me to write this blog, to share my feelings with the world (or the 2-3 people who will probably read this) is an experience that I had over the holiday break. We live in Southlake, TX., a great community with lots of families, a great school district and a general sense of safety and well being. One of my favorite aspects of living in Southlake and Texas in general is the manners and general expectation of kindness and respect that most children here get instilled since birth. This is where I was first called "Ms. Andi" by my little 2 year old neighbor after we first moved here. The high school students address us with respect. I really appreciate those qualities in children-it is so lacking these days (I know I sound like I am 80, sorry about that). We are also blessed with great weather during the winter, often we are able to open windows and play outside when the rest of the country is cold, damp and snowy. The kids had been climbing the walls after Christmas wanting to run off some energy, so Daddy and I took them to a local park that they love to play, feed the ducks and just enjoy the beautiful weather. Cameron and her Daddy ran to the ducks to try to get their attention while Carson went straight to the playground equipment. He loves the slides and this particular park has great equipment-challenging so he can work on his gross motor skills, but he is still able to work his way to where he needs to go without help from Mom. I took my usual spot close to the path he takes and watched as he walked the same path over and over again. Soon, other kids we did not know joined us on the equipment and that is when the problems started. Two little boys, around 6-7 years old, started imitating and making fun of Carson. Carson, who is non-verbal, often makes loud noises and strange gestures when he is excited. It is known in the Autism world as stimming and he does it almost constantly. We are working on it, but it is a hard battle and often, especially when he is outside and being loud is acceptable, we "pick our battles". Sometimes these kids need to have an opportunity to let loose and give in to whatever is going on in their bodies to cause the stimming. So I was letting it go. The little boys started imitating his sounds, would run up on the equipment when Carson was down and then switch when Carson made his way up. They would run from him like he was a scary monster ( I actually heard-"run from the scary monster!) and I couldn't help it, I cried. As I stood there, tears running down my face, one little boy came over and stared at me with a pleased smile on his face. When I asked him to stop staring at my son and said he is not a zoo animal, he responded, "he sure sounds like one." And then he laughed and ran away. I felt my blood run cold realizing that this little boy knew he was being cruel and he just didn't care.
I knew this was coming. I am so blessed that the kids at his school are so accepting and many of them love him. But I knew that the older he gets and the older the kids around him get, the more this will happen. Right now I am so thankful that he had no idea that the kids were making fun of him-he actually thought they were playing a game when they would run away from him, which only broke my heart more. I need to develop thicker skin so when he does understand what is happening, I can be strong for him. But for now I remain sad. I wish we lived in a world where everyone is accepted for their differences, their unique personalities. Who decided what "normal" is? And that it is okay to look down on, make fun of or be cruel to those that do not fit their definition of normal?
Then I thought-computer. Just have a diary on the computer. When I mentioned to my friend my plans, she suggested doing a blog. Mainly to keep friends and family up to date on how my children are doing, but also to possibly reach other parents dealing with the same issues I am. So, I thought I would try it out.
I am a 35 year old mother of two children. Carson, my 7 year old boy, has a dual diagnosis of Autism and Mosaic Down Syndrome. Cameron, my 5 year old girl, is everything you would expect a 5 year old girl to be-both a princess and a tomboy, a Daddy's girl and always eager to please. Cameron, my sweet girl, is a blog topic all her own.
What prompted me to write this blog, to share my feelings with the world (or the 2-3 people who will probably read this) is an experience that I had over the holiday break. We live in Southlake, TX., a great community with lots of families, a great school district and a general sense of safety and well being. One of my favorite aspects of living in Southlake and Texas in general is the manners and general expectation of kindness and respect that most children here get instilled since birth. This is where I was first called "Ms. Andi" by my little 2 year old neighbor after we first moved here. The high school students address us with respect. I really appreciate those qualities in children-it is so lacking these days (I know I sound like I am 80, sorry about that). We are also blessed with great weather during the winter, often we are able to open windows and play outside when the rest of the country is cold, damp and snowy. The kids had been climbing the walls after Christmas wanting to run off some energy, so Daddy and I took them to a local park that they love to play, feed the ducks and just enjoy the beautiful weather. Cameron and her Daddy ran to the ducks to try to get their attention while Carson went straight to the playground equipment. He loves the slides and this particular park has great equipment-challenging so he can work on his gross motor skills, but he is still able to work his way to where he needs to go without help from Mom. I took my usual spot close to the path he takes and watched as he walked the same path over and over again. Soon, other kids we did not know joined us on the equipment and that is when the problems started. Two little boys, around 6-7 years old, started imitating and making fun of Carson. Carson, who is non-verbal, often makes loud noises and strange gestures when he is excited. It is known in the Autism world as stimming and he does it almost constantly. We are working on it, but it is a hard battle and often, especially when he is outside and being loud is acceptable, we "pick our battles". Sometimes these kids need to have an opportunity to let loose and give in to whatever is going on in their bodies to cause the stimming. So I was letting it go. The little boys started imitating his sounds, would run up on the equipment when Carson was down and then switch when Carson made his way up. They would run from him like he was a scary monster ( I actually heard-"run from the scary monster!) and I couldn't help it, I cried. As I stood there, tears running down my face, one little boy came over and stared at me with a pleased smile on his face. When I asked him to stop staring at my son and said he is not a zoo animal, he responded, "he sure sounds like one." And then he laughed and ran away. I felt my blood run cold realizing that this little boy knew he was being cruel and he just didn't care.
I knew this was coming. I am so blessed that the kids at his school are so accepting and many of them love him. But I knew that the older he gets and the older the kids around him get, the more this will happen. Right now I am so thankful that he had no idea that the kids were making fun of him-he actually thought they were playing a game when they would run away from him, which only broke my heart more. I need to develop thicker skin so when he does understand what is happening, I can be strong for him. But for now I remain sad. I wish we lived in a world where everyone is accepted for their differences, their unique personalities. Who decided what "normal" is? And that it is okay to look down on, make fun of or be cruel to those that do not fit their definition of normal?
Subscribe to:
Posts (Atom)