Everyone says when they are expecting- all is want is a healthy baby- 10 fingers and 10 toes- etc. This is a really accurate description of how it feels to find out your child - perfectly healthy, with 10 fingers and toes- has a disability. a teacher/friend of Rob's sent it to us.
Welcome To Holland
byEmily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.* * *
©1987 by Emily Perl Kingsley.
Friday, July 31, 2009
Friday, July 24, 2009
Getting the diagnosis- (repost from spring 2009)
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 kind of a Bi--h? 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)
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 kind of a Bi--h? 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)
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