Monkey gets very anxious being in a group of kids, and it never fails that he melts down at a party, even his own. Last night he couldn't sleep and when I asked him why, he told me that his birthday was making him sad. Of course I pressed him for more details and he said "I just don't want kids at my party, I only want you, dad and Cathy (close family friend and the best hospice nurse on the planet!) to come to my party, does that make me mean?" I told him that he is in no way mean and that he should spend his special day as he wishes to.
Of course his not wanting friends over, not even really liking the idea of friends is heartbreaking to me. It will only get worse as his birthday approaches and I am asked the usual questions "What are you doing for Monkey's birthday?" and I have to explain that he doesn't want a party with friends, that we aren't having a big party for him. I don't want to make anyone fell bad, I don't want my friends or their kids to feel like we don't want them around, or don't like them. I also don't want Monkey to be so stressed out that he isn't enjoying his day.
I guess this is one of those times where a mom just has to suck it up and hope that people understand that Monkey is Monkey, and sometimes he wants people around and other times he just wants to be alone...
Wednesday, November 27, 2013
Thursday, November 21, 2013
Never ending emotions
Yesterday and today we took Monkey to the school district office for common core testing. Any kind of testing makes him very anxious but at least now he tests in a room by himself. He is also being evaluated by the school psychologist every time he is at the district, although he doesn't really know that. He knows there is a lady that is in the testing room who writes stuff down, but he doesn't know what it is. Monkey has spent the last 4 nights sleeping in our room because he just can't sleep through the night and that makes him very anxious.
Today while sitting in the district office for his school we were approached by the school psychologist who requested a brief meeting. She wanted to ask us, especially me (I teach him his lessons) what I see at home. Talking about his many melt downs, vocalizations, twirling, frustration, anger, sadness, etc...caused me to break down. So often I feel like I have in some way failed Monkey. I feel that I must have done something to cause this, that if I had been better he would be okay. I know, I know, he is okay and autism isn't the end of the world, but some days it feels like the end of the world.
Nighttime is a nightmare in my house. As soon as the sun goes down Monkey gets VERY sad and weepy. By the time he finishes his shower and bath and gets lotion rubbed on him he is in tears and asking/saying "Why was I born?" "Why do you even love me?", "I hate myself", "I wish it were never bedtime!" I feel so sad for him, nighttime is the hardest part of his day and nothing I do makes it a happy time. Even if we do something special and it is getting late when we get home, the meltdown comes. Once he goes to sleep it is short lived, he is up withing 3-4 hours and then wants to sleep in our room, which I know isn't good. However, if I leave him in his room he will indeed be up for most of the night, which of course means that I am because I can't sleep until I know that he is.
I know I am rambling here but I am trying so hard to make sense of it all, to separate what is autism behavior and what is Monkey testing the boundaries. He is so smart that it is sometimes difficult to know when he is really needing the attention and really cannot help the way he is behaving and when he is just being defiant because he can be. I often wonder if any other ASD moms and dads feel this way, or if I am just lost...
Today while sitting in the district office for his school we were approached by the school psychologist who requested a brief meeting. She wanted to ask us, especially me (I teach him his lessons) what I see at home. Talking about his many melt downs, vocalizations, twirling, frustration, anger, sadness, etc...caused me to break down. So often I feel like I have in some way failed Monkey. I feel that I must have done something to cause this, that if I had been better he would be okay. I know, I know, he is okay and autism isn't the end of the world, but some days it feels like the end of the world.
Nighttime is a nightmare in my house. As soon as the sun goes down Monkey gets VERY sad and weepy. By the time he finishes his shower and bath and gets lotion rubbed on him he is in tears and asking/saying "Why was I born?" "Why do you even love me?", "I hate myself", "I wish it were never bedtime!" I feel so sad for him, nighttime is the hardest part of his day and nothing I do makes it a happy time. Even if we do something special and it is getting late when we get home, the meltdown comes. Once he goes to sleep it is short lived, he is up withing 3-4 hours and then wants to sleep in our room, which I know isn't good. However, if I leave him in his room he will indeed be up for most of the night, which of course means that I am because I can't sleep until I know that he is.
I know I am rambling here but I am trying so hard to make sense of it all, to separate what is autism behavior and what is Monkey testing the boundaries. He is so smart that it is sometimes difficult to know when he is really needing the attention and really cannot help the way he is behaving and when he is just being defiant because he can be. I often wonder if any other ASD moms and dads feel this way, or if I am just lost...
Thursday, November 7, 2013
Bad days...
Today Monkey had to go to the district offices for what his school calls "Live Days", it is a one day a week where the teacher spends an hour bringing the kids up to speed on the new common core requirements which they are tested 4 times, this year they have these common core exams and FCATS, not fair, but hey what can you do? Normally, I don't make Monkey attend these lessons and instead run them myself at home to save him the anxiety and inevitable meltdown. Today was special, he was to be observed interacting with his classmates, and I am so proud of him for being so willing to go. He did tell me, "Mom, I'm feeling a million different things."right before we went into the building. He almost made it through the whole hour but then got very overwhelmed and was brought out to us. As soon as he saw us he burst into tears. Our long day then began.
As I write this it is 3:42pm and he is in his room feeling bad and not talking to us. He is very upset and although he tells us he is upset with us, we know that he really isn't, that he is indeed upset that he is overwhelmed and he is tired of feeling as he puts it "different than everyone else". I know that I am not alone in the meltdowns that bring about sayings such as "I hate myself", "Why was I born", "I want you to go away", and so on...
Monkey fully understands that he isn't like everyone else, what he doesn't understand is that he is absolutely perfect just the way he is! He doesn't understand why other kids have to be so hurtful and call him names. He doesn't understand why it is so hard for him to make and/or keep friends. He doesn't understand why he doesn't excel at sports, or why he can't seem to learn to ride a bike. He does understand that he is loving, and caring and so willing to try.
I feel blessed to be invited into his private world, that place where he is completely him and he lets loose and sings, and dances and is happy. I am heartbroken when I see him hold back, hang his head, withdraw, become sad and cry. Sometimes this journey is fun, exciting, and magical. At other times it is painful and lonely for all of us. It's during these times that we need to talk to one another, or write, or go for a long walk, we must do something to get through the bad moments, so that we can come back with a brave smile and remind our kids that they are truly amazing, and they don't need to change!
As I write this it is 3:42pm and he is in his room feeling bad and not talking to us. He is very upset and although he tells us he is upset with us, we know that he really isn't, that he is indeed upset that he is overwhelmed and he is tired of feeling as he puts it "different than everyone else". I know that I am not alone in the meltdowns that bring about sayings such as "I hate myself", "Why was I born", "I want you to go away", and so on...
Monkey fully understands that he isn't like everyone else, what he doesn't understand is that he is absolutely perfect just the way he is! He doesn't understand why other kids have to be so hurtful and call him names. He doesn't understand why it is so hard for him to make and/or keep friends. He doesn't understand why he doesn't excel at sports, or why he can't seem to learn to ride a bike. He does understand that he is loving, and caring and so willing to try.
I feel blessed to be invited into his private world, that place where he is completely him and he lets loose and sings, and dances and is happy. I am heartbroken when I see him hold back, hang his head, withdraw, become sad and cry. Sometimes this journey is fun, exciting, and magical. At other times it is painful and lonely for all of us. It's during these times that we need to talk to one another, or write, or go for a long walk, we must do something to get through the bad moments, so that we can come back with a brave smile and remind our kids that they are truly amazing, and they don't need to change!
Virtual School has been a HUGE blessing
When we realized that traditional public school wasn't going to work for Monkey, I became very nervous. How was I going to homeschool him successfully, how would I ensure that he was getting all he needed. Thankfully I discovered k-12 and specifically Mosaic Digital Academy. Through them Aidric attends classes online, I receive all of the traditional text and workbooks for him and teachers editions for myself. This is his second year at Mosaic and he is excelling in ways I NEVER thought possible!
I have the ability to calculate exactly what he needs to accomplish each week to either be right on task or to be slightly ahead of the rest of the school. In most subjects he is able to work ahead, and his intelligence astounds me on a regular basis. In other subjects he gets frustrated easily and we are on task. The biggest rewards in virtual school for us are, Monkey's anxiety level dropping, the ability to set what days if any we have off, and the ability for him to complete the year early.
Monkey's biggest goal since starting at Mosaic has been to finish the year early, for him this accomplishment is huge because when he was attending public school for both Kindergarten and 1st grade I ended up homeschooling him for 4 months in Kindergarten and 1 month in 1st grade. Mosaic has allowed him to work at his own pace with very little distractions and to exceed all expectations that even he had for himself. Monkey sees completing work early as a sign that he is smart, and that is important to him.
Mosaic has meet ups once a month, where all the kids get together for some fun social activity. These make Monkey VERY anxious and unless it is an organized event, such as going to the aquarium or the zoo, or a museum we end up leaving with him in tears because some kid, not understanding Monkey will make a comment like "You're weird, I don't want to play with you." or, he will be called a name like "dork", all of these things really hurt him to his core, he knows he is different and he isn't happy about it. We try very hard to instill in him the FACT that his being unique is a GREAT thing, and that someday he will come into his own. Of course, no matter how smart he is, he's still an 8 year old boy who just wants to be accepted, who just wants friends.
The biggest obstacle we are facing are needing a definitive diagnosis to get him the social help he needs. Sometimes it feels like a catch 22, especially when people continuously tell you that they firmly believe your child is on the spectrum but they need more information before they can diagnose. We just keep plugging away, and just keep loving him through the meltdowns, and the rough patches, just keep telling him how much we love him, how amazing he is, and how our lives were incomplete before we were lucky enough to have him for a son.
No matter what happens from here on out, I am grateful that Monkey is OUR son, he is truly amazing and I enjoy every single day that I get to spend with him. Even the hard stuff is truly amazing and he wouldn't be Monkey without every aspect of his personality.
I have the ability to calculate exactly what he needs to accomplish each week to either be right on task or to be slightly ahead of the rest of the school. In most subjects he is able to work ahead, and his intelligence astounds me on a regular basis. In other subjects he gets frustrated easily and we are on task. The biggest rewards in virtual school for us are, Monkey's anxiety level dropping, the ability to set what days if any we have off, and the ability for him to complete the year early.
Monkey's biggest goal since starting at Mosaic has been to finish the year early, for him this accomplishment is huge because when he was attending public school for both Kindergarten and 1st grade I ended up homeschooling him for 4 months in Kindergarten and 1 month in 1st grade. Mosaic has allowed him to work at his own pace with very little distractions and to exceed all expectations that even he had for himself. Monkey sees completing work early as a sign that he is smart, and that is important to him.
Mosaic has meet ups once a month, where all the kids get together for some fun social activity. These make Monkey VERY anxious and unless it is an organized event, such as going to the aquarium or the zoo, or a museum we end up leaving with him in tears because some kid, not understanding Monkey will make a comment like "You're weird, I don't want to play with you." or, he will be called a name like "dork", all of these things really hurt him to his core, he knows he is different and he isn't happy about it. We try very hard to instill in him the FACT that his being unique is a GREAT thing, and that someday he will come into his own. Of course, no matter how smart he is, he's still an 8 year old boy who just wants to be accepted, who just wants friends.
The biggest obstacle we are facing are needing a definitive diagnosis to get him the social help he needs. Sometimes it feels like a catch 22, especially when people continuously tell you that they firmly believe your child is on the spectrum but they need more information before they can diagnose. We just keep plugging away, and just keep loving him through the meltdowns, and the rough patches, just keep telling him how much we love him, how amazing he is, and how our lives were incomplete before we were lucky enough to have him for a son.
No matter what happens from here on out, I am grateful that Monkey is OUR son, he is truly amazing and I enjoy every single day that I get to spend with him. Even the hard stuff is truly amazing and he wouldn't be Monkey without every aspect of his personality.
Wednesday, November 6, 2013
Meeting with the Social Worker for the first time
PART ONE
Well, today we meet with the school social worker for the first time and I am a bag of nerves. I had bad dreams all night long, dreams about the social worker telling me that I am a horrible mom, that my son does have autism and I caused it, many different dreams but they all came back to the same thing, my sons autism is entirely my fault.
Now, rationally I know that his autism isn't my fault, but there is still that little voice that says "this is your fault". That voice that chides me for being in denial for so long, the voice that wonders how his teachers, and speech therapists didn't see it, or saw it and let it slide. Today is not a good day to be in my head.
I was doing so great with cutting back on smoking cigs and was nearly quit...Now, I am back up to a pack a day, and I feel it, boy do I feel it. I wish I could be like those supermoms I read about, the ones who never sweat, the ones who have autism under control and are never overwhelmed or fearful. Often I feel like a failure for crying at the end of the day or asking for help. I often feel like I want to put Monkey in a protective ball and keep all of the negative people and comments away from him.
I don't know what will happen today, I don't know what to expect. I am afraid, afraid of it all. I wonder if the supermoms have ever felt this way...
PART TWO
The meeting went well, and the nervousness passed! There were so many questions to answer. Like, how well does he sleep? How does he get along with peers? How does he deal with changes to his routine? The list went on and on and we were in with her for an hour. It would have been longer but we filled out the packets ourselves before the meeting. She will be calling us sometime next week with follow-up questions and tomorrow he will be evaluated to see how he interacts with other kids. Thankfully, he has no idea that the school psychologist will be watching him or the melt down would be extreme!
After the meeting we went for a ride to the beach to watch some big waves, and then to Ihop for a bite to eat (I hadn't eat all day because I was so nervous about the meeting). Then we came home to do our schoolwork for the day.
As soon as we walked in the door, poor Monkey had a meltdown and was yelling at his dad and crying. Thankfully he was able to calm down and we got the important things accomplished. The biggest thing I have learned, is that I cannot stress when things don't get accomplished and to prioritize all activities, even laundry and grocery shopping! The MOST important things are making sure that Monkey knows how special he is, that we are ALWAYS here for him and making sure he is on task with his school work.
I just want to thank you all again for taking this journey with us! Together we are NOT alone!
Monday, November 4, 2013
The Quest for answers...
Hello everyone,
I am the mom to an amazing 8 year old boy. His life began like every other child, he walked early, talked on time and met every other milestone like every other kid. Then we began to notice that he didn't play with the other kids, didn't like to have me out of his sight, sang or scripted regularly, rocked continuously and always had to have some part of him moving. We just figured he was different, no big deal.
Then he started kindergarten and the illnesses began. He had several sore throats, fevers, and ear infections. Not to mention the belly aches and head aches. We saw numerous Dr.'s and finally decided to homeschool him for remainder (4 months) of the school year. Finally in May of 2011, the Dr.'s said "It's his tonsils and adenoids". So, we had them removed and began preparing for him to return to public school.
By the end of the Summer he was again having stomach aches, and head aches. The first day of school came and so did the melt down. He held me and begged me not to send him. I made him stay, it was the hardest thing I have EVER done. I went home and had a good cry. I picked him up from school, and he was still miserable but willing to go back. Over the next few weeks he made a couple of friends. He still woke up every morning refusing to go, and every night crying. In November of 2011 the stomach aches got worse as did the diarrhea and head aches. Off to the Dr. we went, when we got there the Dr. told us it could be lactose intolerance. So, we took him home and stopped all dairy. He seemed to get better, then we had to send him back to school. The stomach aches returned and the fever, he missed so much school that I actually had to have my Dr. call and tell the school that my Monkey was really ill.
By February of 2012 things were really out of control, he was crying at the mention of school, but was earning fantastic grades and not acting out in class. I now know that my Monkey internalizes a lot of things and it is not easy for him to express when he is upset out of our home. We went back to the Dr. and he said he felt that my Monkey had severe school anxiety and that he thought he may have asperger's (today it is just Autism Spectrum Disorder), I blasted the Dr., telling him that my son did NOT have any disorder, that he was sick on the weekends too, and if he had a disorder then he would be fine over the weekend (I know, complete denial). I had friends with spectrum kids, who asked me if Monkey was on the spectrum and of course I got angry with them.
I just wasn't ready for any of it, I felt like my precious, perfect baby boy was being stolen from me. He began to regress, wanting to be held, talking baby talk, wanting his toddler toys and stuffed animals to play with.
In May of 2013 my mom was diagnosed with lung cancer and given a month to live, so my oldest son flew down to FL from NYC, and Monkey and I flew down from NH. It was a horrible time in all of our lives and much more so for Monkey, although I didn't realize it at the time. My mom passed away on May 28, 2012.
Monkey seemed to be adjusting well to life in FL. That is, until we started looking to enroll him in school. The stomach aches, fevers, headaches, vomiting, and diarrhea all came back. So, I decided that maybe my Dr. and friends were right. I began to look for a virtual school for my Monkey, and to ask questions about ASD. I got him enrolled in a virtual school where he has excelled beyond my wildest dreams! Getting to the bottom of his issues, has been a LONG hard road. Last year we got no where, and I guess I didn't fight hard enough. This year I demanded help and we are now getting a full evaluation and the school does believe that my Monkey is on the spectrum.
My son used to be able to do many things without being asked, today he can feed his pets with no reminder. He cannot however brush his teeth without help, must be told to take a shower, to take his medicine (fiber and stool softener), to clean up his toys, to put his clothes in the laundry, and many more things. He is often sad, doesn't have friends no matter how hard he tries, has emotional breakdowns where he will cry for 45-90 minutes, and has tantrums where he throws things and hits himself.
I am starting to get used to these things, and truly enjoy every moment I have with my Monkey, my life would be empty without him. I am so lucky to have a special boy who is able to speak, and say I love you. I know that not every mom gets to hear that or even gets to hear her baby's voice.
We don't have an official diagnosis as of yet, but we and the school psychologist feel that he is on the spectrum and we are getting a full evaluation done. We meet with the social worker on Wednesday, November 6, 2013 and are having him observed interacting with other kids on Thursday, November 7, 2013. We will also have him evaluated by professionals outside of the school district.
I hope you will follow us on this journey for answers, as we learn where on the spectrum Monkey is, and follow his milestones and his bright smile.
Thank you all for letting me share.
I am the mom to an amazing 8 year old boy. His life began like every other child, he walked early, talked on time and met every other milestone like every other kid. Then we began to notice that he didn't play with the other kids, didn't like to have me out of his sight, sang or scripted regularly, rocked continuously and always had to have some part of him moving. We just figured he was different, no big deal.
Then he started kindergarten and the illnesses began. He had several sore throats, fevers, and ear infections. Not to mention the belly aches and head aches. We saw numerous Dr.'s and finally decided to homeschool him for remainder (4 months) of the school year. Finally in May of 2011, the Dr.'s said "It's his tonsils and adenoids". So, we had them removed and began preparing for him to return to public school.
By the end of the Summer he was again having stomach aches, and head aches. The first day of school came and so did the melt down. He held me and begged me not to send him. I made him stay, it was the hardest thing I have EVER done. I went home and had a good cry. I picked him up from school, and he was still miserable but willing to go back. Over the next few weeks he made a couple of friends. He still woke up every morning refusing to go, and every night crying. In November of 2011 the stomach aches got worse as did the diarrhea and head aches. Off to the Dr. we went, when we got there the Dr. told us it could be lactose intolerance. So, we took him home and stopped all dairy. He seemed to get better, then we had to send him back to school. The stomach aches returned and the fever, he missed so much school that I actually had to have my Dr. call and tell the school that my Monkey was really ill.
By February of 2012 things were really out of control, he was crying at the mention of school, but was earning fantastic grades and not acting out in class. I now know that my Monkey internalizes a lot of things and it is not easy for him to express when he is upset out of our home. We went back to the Dr. and he said he felt that my Monkey had severe school anxiety and that he thought he may have asperger's (today it is just Autism Spectrum Disorder), I blasted the Dr., telling him that my son did NOT have any disorder, that he was sick on the weekends too, and if he had a disorder then he would be fine over the weekend (I know, complete denial). I had friends with spectrum kids, who asked me if Monkey was on the spectrum and of course I got angry with them.
I just wasn't ready for any of it, I felt like my precious, perfect baby boy was being stolen from me. He began to regress, wanting to be held, talking baby talk, wanting his toddler toys and stuffed animals to play with.
In May of 2013 my mom was diagnosed with lung cancer and given a month to live, so my oldest son flew down to FL from NYC, and Monkey and I flew down from NH. It was a horrible time in all of our lives and much more so for Monkey, although I didn't realize it at the time. My mom passed away on May 28, 2012.
Monkey seemed to be adjusting well to life in FL. That is, until we started looking to enroll him in school. The stomach aches, fevers, headaches, vomiting, and diarrhea all came back. So, I decided that maybe my Dr. and friends were right. I began to look for a virtual school for my Monkey, and to ask questions about ASD. I got him enrolled in a virtual school where he has excelled beyond my wildest dreams! Getting to the bottom of his issues, has been a LONG hard road. Last year we got no where, and I guess I didn't fight hard enough. This year I demanded help and we are now getting a full evaluation and the school does believe that my Monkey is on the spectrum.
My son used to be able to do many things without being asked, today he can feed his pets with no reminder. He cannot however brush his teeth without help, must be told to take a shower, to take his medicine (fiber and stool softener), to clean up his toys, to put his clothes in the laundry, and many more things. He is often sad, doesn't have friends no matter how hard he tries, has emotional breakdowns where he will cry for 45-90 minutes, and has tantrums where he throws things and hits himself.
I am starting to get used to these things, and truly enjoy every moment I have with my Monkey, my life would be empty without him. I am so lucky to have a special boy who is able to speak, and say I love you. I know that not every mom gets to hear that or even gets to hear her baby's voice.
We don't have an official diagnosis as of yet, but we and the school psychologist feel that he is on the spectrum and we are getting a full evaluation done. We meet with the social worker on Wednesday, November 6, 2013 and are having him observed interacting with other kids on Thursday, November 7, 2013. We will also have him evaluated by professionals outside of the school district.
I hope you will follow us on this journey for answers, as we learn where on the spectrum Monkey is, and follow his milestones and his bright smile.
Thank you all for letting me share.
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