A lot has been going on. Robbie has had some really great days- where he is engaged and talking appropriately, and some not so good days where behaviors are difficult to control. His teachers, behaviorists and OT have noticed his difficulty to concentrate and stay on task. When he is focused- he does great work, but the amount of prompts and redirects have increased.
We had an appointment with a new neurologist on friday. He is owner of the Center for Neurological and Neurodevelopmental health (CNNH). They specialize in neurodevelopmental disorders ( Autism's- as he referred to them). Robbie is still Autistic but he may also have Dyspraxia. Developmental dyspraxia is a motor learning difficulty that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.
Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks. Generally, individuals with the disorder appear "out of sync" with their environment. Symptoms vary and may include poor balance and coordination, clumsiness, vision problems, perception difficulties, emotional and behavioral problems, difficulty with reading, writing, and speaking, poor social skills, poor posture, and poor short-term memory.
Many of these symptoms are symptoms of Autism as well. We have begun medication, which we hope will improve concentration. So far it hasn't, but it does seem to quiet his body a bit, which is an improvement. Sleep is still an issue. He had a few good nights and more recently a stretch of bad ones. Fingers crossed that things will improve-- sooner than later!!
Monday, May 9, 2011
Wednesday, April 27, 2011
Autism- Walk for Robbie
I've been thinking a lot about Autism, Robbie and what that means for our family.
1) We get to avoid taking pictures with the Easter bunny and Santa Clause. Really- who as a kid wants to sit next to an over grown Rabbit or a heavy set man in a red suit?
2) We always have an out- of family gatherings, birthday parties, etc.
3) The above items are a bummer.
When we first received the diagnosis of ASD, My husband mourned. I couldn't understand why he was in mourning. Our son is not dying. He does not have cancer or one of those rare childhood diseases. He many end up different- but still OK I thought. I went into fight mode. I will "cure" or "heal" my son, as they say. Jenny McCarthy did it. If I try really hard- I can do it. I thought.
Two years later I am trying really hard and mourning at the same time. I had no idea what Autism was or what it meant. Robbie will not be a super star athlete- but he also may not be able to play any organized activity at all. His OT is concerned that he can not keep his attention on tasks with out repeated prompts. He gets overwhelmed with too much visual stimulation. He can't sit still. He goes "into his own head" with increasing frequency.
I am looking for answers. MRI, EEG, Allergist, Developmental ped, Regular Ped, Neurologist, new neurologist, old neurologist, another new neurologist, behaviorist, additional behaviorist, speech therapist, occupational therapist,another holistic healer.. No one has answers.
To be clear, the answers I am looking for are not completely how to heal my son. They simply are- why isn't he improving? Why does he take 4 steps back with every step forward? Why are his school reports getting progressively worse? Why was he doing do well during the fall and early winter and is doing do poorly now? Why has behavior worsened and not improved? Why have his bowel movements not improved- since we removed the allergen's from his system? If we are doing everything right- why isn't he learning more, feeling better, acting better? What else can I do? What am I missing in the puzzle we call Autism??
I can not stop looking for answers. I will not stop working to help my son. I'm afraid if I stop looking, I will miss something. A clue, a red flag, a cure. The alternative is not something I am ready to accept- Whether that is a good or bad thing- who knows. Robbie is an incredibly sweet and intelligent boy. We need to peel back the layers and find out how to help him.
If you are local- The Walk Now for Autism Speaks event is taking place Saturday, May 21st in Mount Laurel, NJ. Please come and walk for Robbie.
1) We get to avoid taking pictures with the Easter bunny and Santa Clause. Really- who as a kid wants to sit next to an over grown Rabbit or a heavy set man in a red suit?
2) We always have an out- of family gatherings, birthday parties, etc.
3) The above items are a bummer.
When we first received the diagnosis of ASD, My husband mourned. I couldn't understand why he was in mourning. Our son is not dying. He does not have cancer or one of those rare childhood diseases. He many end up different- but still OK I thought. I went into fight mode. I will "cure" or "heal" my son, as they say. Jenny McCarthy did it. If I try really hard- I can do it. I thought.
Two years later I am trying really hard and mourning at the same time. I had no idea what Autism was or what it meant. Robbie will not be a super star athlete- but he also may not be able to play any organized activity at all. His OT is concerned that he can not keep his attention on tasks with out repeated prompts. He gets overwhelmed with too much visual stimulation. He can't sit still. He goes "into his own head" with increasing frequency.
I am looking for answers. MRI, EEG, Allergist, Developmental ped, Regular Ped, Neurologist, new neurologist, old neurologist, another new neurologist, behaviorist, additional behaviorist, speech therapist, occupational therapist,another holistic healer.. No one has answers.
To be clear, the answers I am looking for are not completely how to heal my son. They simply are- why isn't he improving? Why does he take 4 steps back with every step forward? Why are his school reports getting progressively worse? Why was he doing do well during the fall and early winter and is doing do poorly now? Why has behavior worsened and not improved? Why have his bowel movements not improved- since we removed the allergen's from his system? If we are doing everything right- why isn't he learning more, feeling better, acting better? What else can I do? What am I missing in the puzzle we call Autism??
I can not stop looking for answers. I will not stop working to help my son. I'm afraid if I stop looking, I will miss something. A clue, a red flag, a cure. The alternative is not something I am ready to accept- Whether that is a good or bad thing- who knows. Robbie is an incredibly sweet and intelligent boy. We need to peel back the layers and find out how to help him.
If you are local- The Walk Now for Autism Speaks event is taking place Saturday, May 21st in Mount Laurel, NJ. Please come and walk for Robbie.
Tuesday, April 5, 2011
Brains of People with Autism Focus More on Visual Skills - US News and World Report
Brains of People with Autism Focus More on Visual Skills - US News and World Report
MONDAY, April 4 (HealthDay News) -- The brains of people with autism concentrate more resources in areas devoted to visual perception, resulting in less activity in areas used to plan and control thoughts and actions, says a new study.
The findings may explain why people with autism have exceptional visual abilities, said the researchers at the University of Montreal.
They analyzed data from 26 brain imaging studies that were conducted over 15 years and included a total of 357 autistic and 370 non-autistic participants.
"Through this meta-analysis, we were able to observe that autistics exhibit more activity in the temporal and occipital regions and less activity in frontal cortex than non-autistics," first author Fabienne Samson said in a university news release.
The temporal and occipital regions are involved in perceiving and recognizing patterns and objects, while the frontal areas are involved with decision making, cognitive control, planning and execution, she explained.
The findings offer the "first physiological confirmation that enhanced perceptual processing is a core feature of neural organization in this population," Dr. Laurent Mottron, of the university's Centre for Excellence in Pervasive Development Disorders, said in the news release. "We now have a very strong statement about autism functioning, which may be ground for cognitive accounts of autistic perception, learning, memory and reasoning."
According to the study, the finding shows that the autistic brain successfully adapts some of its cognitive functioning by reallocating brain areas to visual perception. The results may point the way to new areas of autism research.
The study appears April 4 in the journal Human Brain Mapping.
The reason I share this information- from the Autism Speaks blog- is Robbie has always had exceptional visual ability. He could literally pick out a needle in a haystack. It's interesting to me that this an ability common among those with Autism.
MONDAY, April 4 (HealthDay News) -- The brains of people with autism concentrate more resources in areas devoted to visual perception, resulting in less activity in areas used to plan and control thoughts and actions, says a new study.
The findings may explain why people with autism have exceptional visual abilities, said the researchers at the University of Montreal.
They analyzed data from 26 brain imaging studies that were conducted over 15 years and included a total of 357 autistic and 370 non-autistic participants.
"Through this meta-analysis, we were able to observe that autistics exhibit more activity in the temporal and occipital regions and less activity in frontal cortex than non-autistics," first author Fabienne Samson said in a university news release.
The temporal and occipital regions are involved in perceiving and recognizing patterns and objects, while the frontal areas are involved with decision making, cognitive control, planning and execution, she explained.
The findings offer the "first physiological confirmation that enhanced perceptual processing is a core feature of neural organization in this population," Dr. Laurent Mottron, of the university's Centre for Excellence in Pervasive Development Disorders, said in the news release. "We now have a very strong statement about autism functioning, which may be ground for cognitive accounts of autistic perception, learning, memory and reasoning."
According to the study, the finding shows that the autistic brain successfully adapts some of its cognitive functioning by reallocating brain areas to visual perception. The results may point the way to new areas of autism research.
The study appears April 4 in the journal Human Brain Mapping.
The reason I share this information- from the Autism Speaks blog- is Robbie has always had exceptional visual ability. He could literally pick out a needle in a haystack. It's interesting to me that this an ability common among those with Autism.
Monday, March 28, 2011
Did you know???
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.
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.
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!
Monday, February 21, 2011
No control
Have you ever felt like you have no control? Over your life? Over your children? The past few weeks have felt that way. Robbie has not been sleeping consistently. Many nights he falls asleep but wakes up anywhere between midnight and 2am. From that point he is awake. Not only awake but disruptive to the rest of the household. He will run back and forth in the hallway. He will jump on our bed. He will talk very loudly- reciting movie lines. If you ask him to quiet down he will scream. I am tired. Rob is tired. Lexi is tired.
He has also developed a new "tick." He rolls his head back and forth. While sitting in a doctors waiting room, while riding in the grocery cart, while sitting on the couch at home. Additionally he has been jumping up and down, flapping and saying "eeeeeeeeeeeeeeeee" more than usual. We did recently discover Robbie has food allergies. He is allergic to milk, eggs, egg whites, soy, pineapple, peanuts and dogs. We have removed these items from his diet. So- these behaviors should get better- right? I feel myself getting frustrated and honestly pissed off. We are all working so hard. We'll see a ounce of improvement and then a pound of regression. I know he can't help these behaviors, but some days I just want him to stop.
We are trying to add more ABA therapy to his schedule. Hopefully covered by insurance. I would like to add more OT as well. There are only so many hours in the day. I'm not sure what else to do. Anyone?? Anyone??
He has also developed a new "tick." He rolls his head back and forth. While sitting in a doctors waiting room, while riding in the grocery cart, while sitting on the couch at home. Additionally he has been jumping up and down, flapping and saying "eeeeeeeeeeeeeeeee" more than usual. We did recently discover Robbie has food allergies. He is allergic to milk, eggs, egg whites, soy, pineapple, peanuts and dogs. We have removed these items from his diet. So- these behaviors should get better- right? I feel myself getting frustrated and honestly pissed off. We are all working so hard. We'll see a ounce of improvement and then a pound of regression. I know he can't help these behaviors, but some days I just want him to stop.
We are trying to add more ABA therapy to his schedule. Hopefully covered by insurance. I would like to add more OT as well. There are only so many hours in the day. I'm not sure what else to do. Anyone?? Anyone??
Saturday, February 19, 2011
Two very different children
Robbie's ABA therapist has been asking me to save pictures from magazines with people doing activities and showing emotion. Dancing, running, smiling, crying, hugging- etc, etc. These are things Robbie doesn't just pick up- like other kids would. A perfect example is our 2 and a half year old daughter. Yesterday she looked at a magazine picture. It showed a woman drinking a diet Pepsi can out of a straw. "Mommy, she's drinking soda. There is a ball- look a circle." This morning I showed Robbie the same picture and asked him what the woman was doing. "Soda" was the response. ( He loves Soda- like all kids- and doesn't get it very often) I asked again- "Yes it is soda- but what is she doing with the soda?" "Soda" was the response. It is amazing to me the way our brains' process information. No one had to teach Lexi what drinking was- but for Robbie, it will have to drilled into his head.
Imaginary play is another example. Both kids are sitting having a "tea party." Lexi says "Mommy look I have coffee. It's yummy." as she drinks the water in her cup. Robbie sits silently and puts his fingers in the cup, feeling the water, pouring it out onto the table. Then gets up and asks for a cookie. He remembers the last time they played this game- they had cookies. His play is more sensory focused. Her play is more imaginary.
On a sweet note, Lexi is doing really well at daycare. The teachers in her room commented on how much she is talking and how well she plays with other kids. They also told me a psychologist came to the daycare to evaluate a little boy in her class. The diagnosis has been determined Autism Spectrum Disorder. The psychologist commented to the teachers on how kind Lexi was to this boy. She helps to guide him to different activities and is the only one who tries to play with him. I was told this empathy is rare in a 2 year old. The teachers explained to the psychologist that Lexi has an Autistic brother. They see her as patient and kind. That makes my heart melt.
Imaginary play is another example. Both kids are sitting having a "tea party." Lexi says "Mommy look I have coffee. It's yummy." as she drinks the water in her cup. Robbie sits silently and puts his fingers in the cup, feeling the water, pouring it out onto the table. Then gets up and asks for a cookie. He remembers the last time they played this game- they had cookies. His play is more sensory focused. Her play is more imaginary.
On a sweet note, Lexi is doing really well at daycare. The teachers in her room commented on how much she is talking and how well she plays with other kids. They also told me a psychologist came to the daycare to evaluate a little boy in her class. The diagnosis has been determined Autism Spectrum Disorder. The psychologist commented to the teachers on how kind Lexi was to this boy. She helps to guide him to different activities and is the only one who tries to play with him. I was told this empathy is rare in a 2 year old. The teachers explained to the psychologist that Lexi has an Autistic brother. They see her as patient and kind. That makes my heart melt.
Monday, February 7, 2011
How was your day?
Every morning Robbie gets on the bus for school and I say "Have a great day!" Every afternoon he gets off and I ask " How was your day?." Silence is the only response as he heads inside the house. Everyday he will come in, take off his coat and hat, hang them up. Hang up his back pack. Sit down on the bench in the hallway and take off his shoes and socks. Then sit on the couch. I will go through his back pack to see if there are any crafts that should be hung up and read the notes from the teacher about his day. Some days he will ask for a movie. Most days I will ask him if he wants a snack or a juice. This has become our routine.
My question is- will Robbie ever answer. And I mean answer the question with a well thought out response- not just a programed response like the ones he is learning in ABA. ( Applied Analysis Therapy) He has started to acknowledge the bus driver when she says good bye. That is a step forward. There is still no actual conversation. He has to learn appropriate responses to questions. For example, it took weeks to teach him to answer the question- How old are you? His response- "I'm four"- and sometimes he says "I'm fork"- but he will hold up 4 fingers. I've been working on "I'm five" with him lately. He will be five in march. His response to the age question now is-"I'm five." Which his sister automatically corrects. "No Robbie is four, not five and I'm two. How old are you Mommy?" She will generally continue talking, and I love to hear it.
I don't know how you teach conversation. I don't think you can. That's the fear. If you can't teach something, Robbie will not learn it. However, you can't teach love, you can't teach caring and he has those abilities. Maybe he will learn casual conversation??
My question is- will Robbie ever answer. And I mean answer the question with a well thought out response- not just a programed response like the ones he is learning in ABA. ( Applied Analysis Therapy) He has started to acknowledge the bus driver when she says good bye. That is a step forward. There is still no actual conversation. He has to learn appropriate responses to questions. For example, it took weeks to teach him to answer the question- How old are you? His response- "I'm four"- and sometimes he says "I'm fork"- but he will hold up 4 fingers. I've been working on "I'm five" with him lately. He will be five in march. His response to the age question now is-"I'm five." Which his sister automatically corrects. "No Robbie is four, not five and I'm two. How old are you Mommy?" She will generally continue talking, and I love to hear it.
I don't know how you teach conversation. I don't think you can. That's the fear. If you can't teach something, Robbie will not learn it. However, you can't teach love, you can't teach caring and he has those abilities. Maybe he will learn casual conversation??
Tuesday, February 1, 2011
Quirky
Quirks are defined as "A peculiarity of behavior." These peculiarities are becoming more noticeable with Robbie. For example, Robbie will not step on the grout on the tile floor in the kitchen. Remember as a kid, not wanting to step on a crack in the sidewalk? "Step on a crack, break your mother's back." When I first noticed it, that is the phrase I thought of and didn't pay much attention. As I got to thinking, Robbie has a lot of quirky behaviors. After going pee pee on the potty, he will take 2-3 squares of toilet paper, one at a time, ensuring that the last one has been riped completely. Then he will flush, watch the TP go down, close the lid- with a big bang and turn off the light. If you interrupt this sequence of events, he becomes agitated. Then there is the running back and forth saying "eeeeeeee." The constant streaming of movie lines- jumping from one movie scene to the next.
Some days these quirks don't bother me at all. Other days they drive me insane. I think a large reason is on the days when his quirks are the worst, he is out of sorts as well. He is "spacey" and more difficult to engage. I can ask him a question or ask him to complete a task and he will act as if I never said a word. Frustrating.
These are also the behaviors that make it difficult for him to ride a bike. He can't seem to focus and if his eye catches sight of something interesting to his left- that's where the bike ends up- a ditch, puddle or bush.
I know these will be the things we're really going to ave to work hard at as he gets older. Not only so he isn't the weird kid, but so he can function and complete a task. Some days are so good and others- no so good. But we keep working- keep him working. He is an incredibly loving boy and who knows what potential is untapped!!
Some days these quirks don't bother me at all. Other days they drive me insane. I think a large reason is on the days when his quirks are the worst, he is out of sorts as well. He is "spacey" and more difficult to engage. I can ask him a question or ask him to complete a task and he will act as if I never said a word. Frustrating.
These are also the behaviors that make it difficult for him to ride a bike. He can't seem to focus and if his eye catches sight of something interesting to his left- that's where the bike ends up- a ditch, puddle or bush.
I know these will be the things we're really going to ave to work hard at as he gets older. Not only so he isn't the weird kid, but so he can function and complete a task. Some days are so good and others- no so good. But we keep working- keep him working. He is an incredibly loving boy and who knows what potential is untapped!!
Thursday, January 27, 2011
Making progress
Every few weeks Robbie's school holds a "clinic"- which is really a parent- teacher conference. Not only does the teacher attend, but the speech therapist and case manager do as well. The reports are all pretty good and encouraging. Robbie is making progress. He is communicating more. The next step would be to transition into an autistic kindergarten program. The class is across the hall, which makes the transition easier. From there, they do try to integrate with the main stream children for "specials"- music, art and gym. My husband attended this last clinic and came home with the good report. I was so excited to hear the news- I misunderstood what he had told me. I thought they were saying Robbie might be mainstreamed for first grade. What an accomplishment! The truth is he will not be. First grade will most likely be at a different school with additional special needs class rooms. They will make an effort while he at his current school to integrate and see how it goes for short sessions. Intellectually, this makes the most sense. I know Robbie is not ready to be in a regular classroom. I was just so excited to "hear" the possibility.
I am trying not to be disappointed. We have a long way to go and I am truly happy with his progress. It is just slow. His 2 year old sister has a much wider vocabulary. She speaks in full sentences and makes up imaginary scenarios. She "reads" books to herself- getting a few words right- just from memory, as we read the same books over and over.
Rob and I got into the conversation , again, last night. How could we have missed the signs. In retrospect- some signs were there. Again we feel because he is so loving and does smile and laugh, we over looked the spaciness and lack of words. "He's a boy, they mature later, they develop language later." I should have had an idea when the biting began in the 2 year old room at day care. Especially when a friend of mine had said her son told her Robbie had bitten him. (She wasn't mad- it's daycare, it happens) I remember being amazed that a two year old could communicate that clearly. Still, I thought, hopped, Robbie would catch up. Now here we are. He will be 5 years old in March. He has memorized a lot of phrases. "What is your name? How old are you? Where do you go to school?, etc." The challenge is- does he really understand what he is saying, or is it programed like a computer.
Again, we're looking long term. Rob teaches special education and there is a gym class on Fridays where many of the students are autistic. Part of me wants to go and observe. Most of me knows I will be a mess when I see what my husband sees everyday. The 17 year old boys flapping their hands, not being able to sit still, only having a few key phrases and their career choices are to work at Shop Rite or Wawa stocking shelves. I'm not sure I am really ready to handle that reality. Right now he is a cute little boy who is working so hard. I have to dream that he will have friends, get married, have a fulfilling career. I have to keep hoping. I can't deal with the alternative. So we continue with intense ABA, speech and OT. What else can you do?
I am trying not to be disappointed. We have a long way to go and I am truly happy with his progress. It is just slow. His 2 year old sister has a much wider vocabulary. She speaks in full sentences and makes up imaginary scenarios. She "reads" books to herself- getting a few words right- just from memory, as we read the same books over and over.
Rob and I got into the conversation , again, last night. How could we have missed the signs. In retrospect- some signs were there. Again we feel because he is so loving and does smile and laugh, we over looked the spaciness and lack of words. "He's a boy, they mature later, they develop language later." I should have had an idea when the biting began in the 2 year old room at day care. Especially when a friend of mine had said her son told her Robbie had bitten him. (She wasn't mad- it's daycare, it happens) I remember being amazed that a two year old could communicate that clearly. Still, I thought, hopped, Robbie would catch up. Now here we are. He will be 5 years old in March. He has memorized a lot of phrases. "What is your name? How old are you? Where do you go to school?, etc." The challenge is- does he really understand what he is saying, or is it programed like a computer.
Again, we're looking long term. Rob teaches special education and there is a gym class on Fridays where many of the students are autistic. Part of me wants to go and observe. Most of me knows I will be a mess when I see what my husband sees everyday. The 17 year old boys flapping their hands, not being able to sit still, only having a few key phrases and their career choices are to work at Shop Rite or Wawa stocking shelves. I'm not sure I am really ready to handle that reality. Right now he is a cute little boy who is working so hard. I have to dream that he will have friends, get married, have a fulfilling career. I have to keep hoping. I can't deal with the alternative. So we continue with intense ABA, speech and OT. What else can you do?
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