Approximatly 67 million people are affected by Autism worldwide
Autism is the fastest growing serious developmental disability in the world
More children will be diagnosed with Autism than Diabetes, AIDS and Cancer
combined this year
Boys are 4 times more likely than girls to have Autism
There is no medical detection or cure for Autism
April 2nd is worldwide Autism Awareness day. The number of people affected by Autism is staggering- and increasing. We are learning a lot about this disability but we have a long way to go. I also bring this up because of the lack of understanding about Autism.
Every child with Autism does not take medication. We are struggling with that a bit now. We may add medication for sleep but we do not want our son to sleep walk through his day either by being on too much. It's a fine line- especially when it's a 5 year old.
What would we do if we had a down syndrome child, or a blind child? I don't know the answer. What I do know is if we had a child with down syndrome we would have been more prepared because we would have known through testing.
Autism does not mean no emotion. Our son is very affectionate and loves hugs. Positive reinforcement is more valuable to him than food or toy rewards.
The most frustrating part about autism is the constant regression. You feel like you have behaviors and issues under control and they return. You have to start over.
There are some very famous individuals on the spectrum. Bill Gates, Iassac Newton, Steven Spielberg, Albert Einstein and Daryl Hannah.
Our greatest challenge right now is keeping positive and keeping consistent. As with all parenting consistency is key. As with all parents, some days we give in out of exhaustion or frustration. BUT- we keep going, because we love our kids. Autism or no Autism.
Monday, March 28, 2011
Thursday, March 24, 2011
Running in circles
The past few weeks have been extremely stressful and frustrating. As I have mentioned for every step we make forward there are two steps back. Now it may be three. Robbie has been tough. He has not been following direction- a skill he was good at. He has not been getting good reports from school- which is odd. He has not wanted to get dressed in the morning- something we thought we had overcome. He has not been going to the bathroom on the toilet- a behavior we had mastered. He has not been sleeping regularly- an issue we've always had. Most importantly to me- he has not been "present" more of the time. He is in his own world. Why? I wish I knew.
We have changed his diet and removed the items he is allergic too- via the allergist. ( Milk, eggs, egg whites, soy, peanuts, and pineapple.) One would assume Robbie would be responding positively. He was never a big dairy eater to begin with. He hates eggs and won't go near peanuts or peanut butter- so the diet isn't that different. Why is he going nuts?
Over the next few weeks we have appointments with the developmental pediatrician, the neurologist, the allergist, the regular pediatrician, his school, and I think I am calling the "healer" we saw in the beginning. I am truely at a loss. We were making progress. I pray this is a minor set back but it scares me.
We have changed his diet and removed the items he is allergic too- via the allergist. ( Milk, eggs, egg whites, soy, peanuts, and pineapple.) One would assume Robbie would be responding positively. He was never a big dairy eater to begin with. He hates eggs and won't go near peanuts or peanut butter- so the diet isn't that different. Why is he going nuts?
Over the next few weeks we have appointments with the developmental pediatrician, the neurologist, the allergist, the regular pediatrician, his school, and I think I am calling the "healer" we saw in the beginning. I am truely at a loss. We were making progress. I pray this is a minor set back but it scares me.
Monday, March 14, 2011
Getting the diagnosis- repost from july 2009
Below is a repost of the getting the diagnosis- our very first blog entry from july 2009. It was requested- so here it is!
Your son has Autism Spectrum Disorder. That was a phrase we were not prepared to hear in late May, early June 2009. After asking for more specifics-"somewhere in the middle" was the response. Thanks for being vague- Neurological pediatrician!! We left the office with a prescription for intensive speech therapy, Applied behavior analysis therapy and Occupational therapy- and a bunch of support group information.
Where do we start? When our perfect little boy turned 2 Robbie's pediatrician suggested we get an evaluation from early intervention- state based agency. This was due to a speech delay. We didn't think much about it and after a few weeks- decided to go ahead and book an evaluation. Shortly after 2 women came to the house and evaluated him on speech, fine and gross motor skills and basic development. He completed just about every task they requested and they were impressed by his independence. Robbie climbed into his highchair, grabbed the fruit bowl, began peeling a banana- which at that point he called "banana".
After the evaluation we were told he did not qualify for services because he had to be found at least 33% below average in 1 category or 25% below in multiple categories. Slightly relieved- we began to think about names for baby number 2.
Between the time Robbie was 2 and turned 3 we noticed his speech not developing and some words seemed to be lost. Every piece of fruit was "apple"'- even banana's. But he was still the happy, affectionate little boy he had always been. Then we noticed he didn't seem to play with other kids his age in day care. We would ask the daycare provider- if this was unusual. There response was- all kids are different. Sometimes he interacts- sometimes not. But at that time he was still playing with cousins and family friends, when we had them over. Or was he? Maybe they were playing with him?
We decided at 2 and a half to pay for private speech therapy. We thought some help with speech was all he'd need to be able to communicate and interact. We found a location about 15-20 minutes from our house. They charged $75 for 30 minutes and wanted to see him twice a week- on Tuesday evening(at dinner time) with 1 therapist and Saturday mornings- bright and early- with another. Each session involved a lot of frustration and tantrums. They moved him from room to room- trying to get and keep his attention. The evening therapist stated- after 2 sessions- "I think he may have sensory issues." That comment enraged and scared me to death. What are sensory issues? Couldn't it just be that this is the worst time of day for him? There is too much stimulus. You're not very nice. After spending a lot of money, time and energy- we decided this was not the best option for Robbie- after all he was just "busy"- like all boys his age.
At 3 years old, we called the Medford lakes school system hoping for some resources close to home. They evaluated Robbie in 3 settings- our home, daycare and their school. At home, Robbie excelled at most categories with the exception of speech. The speech therapist could not get him to engage at all. While at the school, I had to leave briefly to throw away a diaper- when I returned Robbie was so upset he'd thrown up on the floor. I didn't tell him I was leaving- he was in a strange environment- with strange people- and it took me twice as long as I'd planned- beginning derailed on my quest for the trash by a friendly school nurse. So- this wasn't to be unexpected- was it??
When we read the evaluation done by a school psychologist at Robbie's daycare - we were very concerned. Robbie was not wearing shoes ( but his feet were probably hot, he needed a bigger size, I don't like shoes either) All the kids , except Robbie, were engaged in circle time. Next they had 2 choices for centers- coloring with chalk or making plants. Robbie was prompted to go join one of the choices. He ran back and forth eleven times ( yes , she counted) while making vocalizations- some sounding like "heeeee". at the end of the review it stated Robbie was in the 11th percentile of social behavior functioning.
We were happy to be told that - yes he does qualify for services. We got him enrolled in Medford Lakes preschool. This allowed the school system to get a better sense of his skill set and needs. This would also allow him to get the speech therapy we knew he needed. The day I brought Robbie to pre-school and stayed for a few minutes to see how he liked it. He had a tough time adjusting- but no major tantrums. The preschool day goes from 8:23am- 10:53am- odd I know. After preschool I picked up Robbie and was going to take him to kindercare for the afternoon- so I could get some work done. That was the plan- Kindercare could bus him to preschool in the morning and pick up him up after- so Rob and I could continue working. Kindercare is a place Robbie has always been very happy to go to. However on this day he had a major meltdown. He did not want to be there. He was tired. The morning had drained him. We knew we had to re-evaluate our plan.
Thankfully- between, myself, my husband and my mother in law we were able to get through the last few weeks of school. During the second week, Robbie's teacher pulled me aside and said " I'm not supposed to share this with you, but you may want to get Robbie evaluated by a neurological pediatrician." THANK YOU- was all I could say. Rob had mentioned seeing a pediatric neurologist in an IEP meeting previously, but no one said- yes that might be a good idea. We didn't know where to go or who to see. She said " As a parent I know you want answers." True - but the answer we received was not the answer we were really prepared to hear. ( Even after having read all the Jenny Mccarthy books relating to her personal story with an autistic son- and having a feeling deep in my soul that something was not right)
Your son has Autism Spectrum Disorder. That was a phrase we were not prepared to hear in late May, early June 2009. After asking for more specifics-"somewhere in the middle" was the response. Thanks for being vague- Neurological pediatrician!! We left the office with a prescription for intensive speech therapy, Applied behavior analysis therapy and Occupational therapy- and a bunch of support group information.
Where do we start? When our perfect little boy turned 2 Robbie's pediatrician suggested we get an evaluation from early intervention- state based agency. This was due to a speech delay. We didn't think much about it and after a few weeks- decided to go ahead and book an evaluation. Shortly after 2 women came to the house and evaluated him on speech, fine and gross motor skills and basic development. He completed just about every task they requested and they were impressed by his independence. Robbie climbed into his highchair, grabbed the fruit bowl, began peeling a banana- which at that point he called "banana".
After the evaluation we were told he did not qualify for services because he had to be found at least 33% below average in 1 category or 25% below in multiple categories. Slightly relieved- we began to think about names for baby number 2.
Between the time Robbie was 2 and turned 3 we noticed his speech not developing and some words seemed to be lost. Every piece of fruit was "apple"'- even banana's. But he was still the happy, affectionate little boy he had always been. Then we noticed he didn't seem to play with other kids his age in day care. We would ask the daycare provider- if this was unusual. There response was- all kids are different. Sometimes he interacts- sometimes not. But at that time he was still playing with cousins and family friends, when we had them over. Or was he? Maybe they were playing with him?
We decided at 2 and a half to pay for private speech therapy. We thought some help with speech was all he'd need to be able to communicate and interact. We found a location about 15-20 minutes from our house. They charged $75 for 30 minutes and wanted to see him twice a week- on Tuesday evening(at dinner time) with 1 therapist and Saturday mornings- bright and early- with another. Each session involved a lot of frustration and tantrums. They moved him from room to room- trying to get and keep his attention. The evening therapist stated- after 2 sessions- "I think he may have sensory issues." That comment enraged and scared me to death. What are sensory issues? Couldn't it just be that this is the worst time of day for him? There is too much stimulus. You're not very nice. After spending a lot of money, time and energy- we decided this was not the best option for Robbie- after all he was just "busy"- like all boys his age.
At 3 years old, we called the Medford lakes school system hoping for some resources close to home. They evaluated Robbie in 3 settings- our home, daycare and their school. At home, Robbie excelled at most categories with the exception of speech. The speech therapist could not get him to engage at all. While at the school, I had to leave briefly to throw away a diaper- when I returned Robbie was so upset he'd thrown up on the floor. I didn't tell him I was leaving- he was in a strange environment- with strange people- and it took me twice as long as I'd planned- beginning derailed on my quest for the trash by a friendly school nurse. So- this wasn't to be unexpected- was it??
When we read the evaluation done by a school psychologist at Robbie's daycare - we were very concerned. Robbie was not wearing shoes ( but his feet were probably hot, he needed a bigger size, I don't like shoes either) All the kids , except Robbie, were engaged in circle time. Next they had 2 choices for centers- coloring with chalk or making plants. Robbie was prompted to go join one of the choices. He ran back and forth eleven times ( yes , she counted) while making vocalizations- some sounding like "heeeee". at the end of the review it stated Robbie was in the 11th percentile of social behavior functioning.
We were happy to be told that - yes he does qualify for services. We got him enrolled in Medford Lakes preschool. This allowed the school system to get a better sense of his skill set and needs. This would also allow him to get the speech therapy we knew he needed. The day I brought Robbie to pre-school and stayed for a few minutes to see how he liked it. He had a tough time adjusting- but no major tantrums. The preschool day goes from 8:23am- 10:53am- odd I know. After preschool I picked up Robbie and was going to take him to kindercare for the afternoon- so I could get some work done. That was the plan- Kindercare could bus him to preschool in the morning and pick up him up after- so Rob and I could continue working. Kindercare is a place Robbie has always been very happy to go to. However on this day he had a major meltdown. He did not want to be there. He was tired. The morning had drained him. We knew we had to re-evaluate our plan.
Thankfully- between, myself, my husband and my mother in law we were able to get through the last few weeks of school. During the second week, Robbie's teacher pulled me aside and said " I'm not supposed to share this with you, but you may want to get Robbie evaluated by a neurological pediatrician." THANK YOU- was all I could say. Rob had mentioned seeing a pediatric neurologist in an IEP meeting previously, but no one said- yes that might be a good idea. We didn't know where to go or who to see. She said " As a parent I know you want answers." True - but the answer we received was not the answer we were really prepared to hear. ( Even after having read all the Jenny Mccarthy books relating to her personal story with an autistic son- and having a feeling deep in my soul that something was not right)
Saturday, March 5, 2011
Some Good News!!!!
I know a lot of these posting have been doom and gloom. Here is some good news. In the state of NJ a bill had been passed stating that insurance will cover up to $25,000 annually for autism related services. It has taken months to actually go into effect-and many phone calls- but now we are able to take advantage of this. We had a company called interactive kids come to the house to access Robbie so that we can get additional Applied Behavior Analysis therapy. With the summer approaching we want to make sure we maximize every minute. They are going to focus more on play and interacting with other kids. We are also going to add more occupational therapy. 80% of that will now be covered. ( $100 an hour- so thank you lord~~)We're still seeing a lot of stiming. Jumping, running back and forth, head shaking, saying eeeeeeeeeeeeeeeeeeeeeee. I am really excited for more hours. I find that the busier Robbie is- the better his behavior is. This is probably pretty typical of all kids- but seems to resonate more with Robbie.
Today I set up stations in the kitchen and dinning room. Painting at one table, pasta stringing at the next and stickers at the last. This kept his hands and mind busy for a little while. Rob and I are also doing a lot more OT at home. At night we'll wrap him in a blanket and swing him. It settles him down immediately. Of course his sister wants a turn too- but she's lighter so it's a little easier. The struggle continues- but at least I feel that we'll be able to give him more of what he needs. That can only help!!!!!! Right?
Today I set up stations in the kitchen and dinning room. Painting at one table, pasta stringing at the next and stickers at the last. This kept his hands and mind busy for a little while. Rob and I are also doing a lot more OT at home. At night we'll wrap him in a blanket and swing him. It settles him down immediately. Of course his sister wants a turn too- but she's lighter so it's a little easier. The struggle continues- but at least I feel that we'll be able to give him more of what he needs. That can only help!!!!!! Right?
Wednesday, March 2, 2011
Parenthood
The Parenthood that I am referring to is a Television show on Tuesday nights. Every week I look forward to watching and every week I end up crying through the majority of the show. The reason is one of the families have an Autistic son. He has Aspergers and is a little older than Robbie, but I can relate to the struggles they are going through. The episode that aired last night is already all over the Autism Speaks blog. The son "Max" over heard his father saying he has Aspergers and wanted to know what that meant. Personally, we are not at that point yet. We are still trying to get Robbie to answer basic questions consistently- What is your name? How old are you? How are you? The portion of the show that really hit home was when the Dad took Max to an amusement park, instead of following the routine and going to school. As you can imagine- chaos ensued when the ride Max wanted to go on needed to be repaired. When they got home- the Dad explained that he just wanted to have a fun day with his son. Create a memory. Feel like a "normal" family- whatever that means.
I had a similar conversation with my husband this past week. It seems like every time Robbie makes progress, we start to do "normal" family activities. Got to walmart, go out to lunch, go bowling. I love doing this things together. Then something happens to remind us of the challenges Robbie faces. He is allergic to many things- so going to restaurants is difficult- unless we plan and bring food. He develops a new behavior that is odd and people stare. It shouldn't bother me- but like the father in parenthood- it does. I see my beautiful baby boy struggling to feel comfortable in his own skin. It is crushing because it seems there is little I can do at those moments except hug him.
In the past week I have placed 4 calls to our neurologist- made an appointment for June (the earliest I can get in). Made an appointment with the developmental pediatrician for April. Made an appointment to have additional ABA therapy in the home. Spoke with the Allergist twice. And cried a lot. Two steps forward and three steps back and still no answers. Last night Rob told me Robbie recognized the words Robbie, Lexi, Daddy and Mommy. He could pick out which was the correct word association. That is awesome. Last night I asked Robbie a simple question at dinner. One we have gone over hundreds of times. "What is your name?" "I'm four." "What is your name?" "I'm fine." "What is your name?" The final answer was something I couldn't understand. Meanwhile Lexi is saying " That's Robbie. My name is Lexi. You're Mommy. I'm two- Robbie is four." Etc.
So today we get right back into our routine. Some OT in the morning and afternoon filled with private ABA (because school is cancelled for parent teacher conferences). Followed by jumping on the trampoline or moon bounce that occupies the space that once was a dinning room. Swinging on the swings and doing some craft project to keep the hands busy. Having a dairy free, egg free, soy free, milk free, pineapple free dinner and back to bed for the night!
I had a similar conversation with my husband this past week. It seems like every time Robbie makes progress, we start to do "normal" family activities. Got to walmart, go out to lunch, go bowling. I love doing this things together. Then something happens to remind us of the challenges Robbie faces. He is allergic to many things- so going to restaurants is difficult- unless we plan and bring food. He develops a new behavior that is odd and people stare. It shouldn't bother me- but like the father in parenthood- it does. I see my beautiful baby boy struggling to feel comfortable in his own skin. It is crushing because it seems there is little I can do at those moments except hug him.
In the past week I have placed 4 calls to our neurologist- made an appointment for June (the earliest I can get in). Made an appointment with the developmental pediatrician for April. Made an appointment to have additional ABA therapy in the home. Spoke with the Allergist twice. And cried a lot. Two steps forward and three steps back and still no answers. Last night Rob told me Robbie recognized the words Robbie, Lexi, Daddy and Mommy. He could pick out which was the correct word association. That is awesome. Last night I asked Robbie a simple question at dinner. One we have gone over hundreds of times. "What is your name?" "I'm four." "What is your name?" "I'm fine." "What is your name?" The final answer was something I couldn't understand. Meanwhile Lexi is saying " That's Robbie. My name is Lexi. You're Mommy. I'm two- Robbie is four." Etc.
So today we get right back into our routine. Some OT in the morning and afternoon filled with private ABA (because school is cancelled for parent teacher conferences). Followed by jumping on the trampoline or moon bounce that occupies the space that once was a dinning room. Swinging on the swings and doing some craft project to keep the hands busy. Having a dairy free, egg free, soy free, milk free, pineapple free dinner and back to bed for the night!
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