Post by lizziemac on Apr 21, 2005 21:30:18 GMT -5
How isolated life can be today,
and 'finding out', or 'suddenly realizing', or 'coming to terms with the fact' that your perfect little boy is, well, not so perfect after all,
is hard to bare, and even harder to share.
The term "admitting something's wrong" comes to mind.
Mac (my husband) and I met in Portsmouth NH in 1998, and as we had both been previously married, without children we disembarked on a fast-track relationship route to start a family as soon as possible.
I had an uneventful pregnancy, never suffered from any sickness, but did experience extreme carpel tunnel syndromes in both wrists, which still affect me, following any repetitive tasks.
We opted for having an amino synthesis that confirmed that my baby was going to be a boy, and to intents and purposes, he would be ‘normal’<br> I was 38 when John was born. Apart from a little jaundice and a blocked tear duct that immerged later, and stopped when he turned one, he had no unusual health issues.
He was a beautiful baby, and was far better at the mummy/baby thing than I was. We planned on breast feeding for a year, and he was breast fed until eight months, when I believe returning to high pressure job took it’s toll on my milk production. Everyone loved John at the Bright Horizons Childcare situated in the building where I worked. I loved my Job, but it became increasingly harder to cope with not traveling to Asia (expected 4-6 times a year) and changes of personnel did not respect my seniority, and experience. Long story short I left, and expected to return to work after a period on evaluation and indulgence of my belief that I was the best person to care for my son.
We moved when John was 15 months old, from Dover NH to Hinsdale NH, Where we reside now.
John was 18 months old when Mac and I noticed that he had begun to ‘loose’ the few words had.
His level of frustration grew and with hindsight I can tell he was angered by his state. I was 7 months pregnant with Daisy and did not know why he was like this and how to help him.
John seemed to speak less and less, he would spend hours by himself, spinning toys, and watching wheels rotate close-up, he would always turn a toy vehicle upside down and spin the wheels.
With limited knowledge that we had at that time, we felt that John did not have the attributes of "typical child with autism”.
But we were concerned, as we knew he was troubled.
We were not educated about any spectrum, and did not have a clue where to go with our concerns.
I spoke with my mother on the phone (she lives in Ireland). Obviously she was trying to console me don’t worry he’ll come around just wait and see.
Mac spoke with his mom who is also 3000 miles away and she said nothing!
My best friend told me that her father – a pilot for American Airlines never spoke until he was 4, and that children do things at their own pace. I read the typical articles in parenting publications, but was the information, and advice was not conclusive, so as to confirm any developmental disorder.
At Daisy's one month check-up I asked my family doctor about John, and what I could do.
He said wait.
John turned 2 and he continued not to talk and his tantrums were became increasingly difficult to manage, so we asked the doctor for a referral (not knowing that one does not need referral to get help)
Following a “paper-work” meeting with our area agencies, we finally had John ‘seen’ late spring. We asked the evaluators about autism – but they would not confirm or deny.
The team at RISE for Baby and Family, Keene NH helped us start an intensive early intervention plan that combined child-lead scheduled activities, occupational therapy and speech language therapy, both at home, and Great Beginnings child care where he and Daisy attended 3 days a week. RISE. John began the Jumpstart program and we met regularly to learn, share and construct a plan, a vision for John, his life, and his future.
Not until December of that year did we get the diagnosis confirmed -Pervasive Development Disorder otherwise non-specified, with Apraxia and Dyspraxia, from Dr Carl Cooley, at Crotchet Mountain. Mac and I also decided to implement considerable dietary change. John was placed on Gluten, and Casein free diet during the fall of 2003.
Now we are 2 years into early intervention/education, and I can look back on how much we have learned. The coping strategies adopted for John really help with Daisy. Although Neuro-typical, Daisy is like John in many ways. She also has huge sensory needs and enjoys high impact activities. We can promote self-regulation for the both of them.
We hone into every detail of John and his education. We meet regularly with his pre-school teachers who know how bright he is and share our conviction that John will realize his full potential, mainstreaming school with total inclusion by age 8 or sooner.
Currently he attends our local pre school both morning and afternoon with an one on one aide, and has just recently toilet trained (a huge deal for boys, and kids on the spectrum!) He does not take a nap and is generally making awesome progress. One of the goals on his four-year IEP is to read a story to a friend.
Mac and I, like all of you, continually search for more information to educate ourselves to better represent our children, and lead them to into a full and happy life.
There are still moments when I wish I could turn back time…. We have a DVD with videos of John at 9 months and then at 12 months old. With hindsight I could see the onset of regression in those 3 months, and looking back makes me feel rather inadequate for not recognizing "something's-up with John " before. I had left Timberland to be a stay-at-home mom, and therefore John had left the day-care there, so I was isolated. If only he'd stayed in day-care - maybe we would have recognized it sooner, if only we had put him on a GFCF diet sooner, if only we had questioned the MMR's and opted for splitting the vaccinations, if only…….
Today I spent the afternoon at John preschool. I remember back to a time during the transition schedule. John proved himself to be a fast runner (out the door) and the thought of him sitting to complete a project, or joining for a group-time song seemed absurd.
John’s teacher loves to plan special (messy) projects for me to complete with the children during the class. This afternoon, everyone was to plant a couple of sunflower seeds in a pot with their name on.
After the planting was done some children sat down, staring at the pot waiting for the something to happen.
The anti climatic looks on their faces made me glad that John and Daisy planted seeds last month. On his turn, John scooped the soil, planted his seeds, watered (drowned) them and retuned to group time like a real pro’.
Its good to know that the seeds we plant will grow, and grow, and eventually bloom, and someday maybe plant seeds of there own.
Keep on keeping on.
and 'finding out', or 'suddenly realizing', or 'coming to terms with the fact' that your perfect little boy is, well, not so perfect after all,
is hard to bare, and even harder to share.
The term "admitting something's wrong" comes to mind.
Mac (my husband) and I met in Portsmouth NH in 1998, and as we had both been previously married, without children we disembarked on a fast-track relationship route to start a family as soon as possible.
I had an uneventful pregnancy, never suffered from any sickness, but did experience extreme carpel tunnel syndromes in both wrists, which still affect me, following any repetitive tasks.
We opted for having an amino synthesis that confirmed that my baby was going to be a boy, and to intents and purposes, he would be ‘normal’<br> I was 38 when John was born. Apart from a little jaundice and a blocked tear duct that immerged later, and stopped when he turned one, he had no unusual health issues.
He was a beautiful baby, and was far better at the mummy/baby thing than I was. We planned on breast feeding for a year, and he was breast fed until eight months, when I believe returning to high pressure job took it’s toll on my milk production. Everyone loved John at the Bright Horizons Childcare situated in the building where I worked. I loved my Job, but it became increasingly harder to cope with not traveling to Asia (expected 4-6 times a year) and changes of personnel did not respect my seniority, and experience. Long story short I left, and expected to return to work after a period on evaluation and indulgence of my belief that I was the best person to care for my son.
We moved when John was 15 months old, from Dover NH to Hinsdale NH, Where we reside now.
John was 18 months old when Mac and I noticed that he had begun to ‘loose’ the few words had.
His level of frustration grew and with hindsight I can tell he was angered by his state. I was 7 months pregnant with Daisy and did not know why he was like this and how to help him.
John seemed to speak less and less, he would spend hours by himself, spinning toys, and watching wheels rotate close-up, he would always turn a toy vehicle upside down and spin the wheels.
With limited knowledge that we had at that time, we felt that John did not have the attributes of "typical child with autism”.
But we were concerned, as we knew he was troubled.
We were not educated about any spectrum, and did not have a clue where to go with our concerns.
I spoke with my mother on the phone (she lives in Ireland). Obviously she was trying to console me don’t worry he’ll come around just wait and see.
Mac spoke with his mom who is also 3000 miles away and she said nothing!
My best friend told me that her father – a pilot for American Airlines never spoke until he was 4, and that children do things at their own pace. I read the typical articles in parenting publications, but was the information, and advice was not conclusive, so as to confirm any developmental disorder.
At Daisy's one month check-up I asked my family doctor about John, and what I could do.
He said wait.
John turned 2 and he continued not to talk and his tantrums were became increasingly difficult to manage, so we asked the doctor for a referral (not knowing that one does not need referral to get help)
Following a “paper-work” meeting with our area agencies, we finally had John ‘seen’ late spring. We asked the evaluators about autism – but they would not confirm or deny.
The team at RISE for Baby and Family, Keene NH helped us start an intensive early intervention plan that combined child-lead scheduled activities, occupational therapy and speech language therapy, both at home, and Great Beginnings child care where he and Daisy attended 3 days a week. RISE. John began the Jumpstart program and we met regularly to learn, share and construct a plan, a vision for John, his life, and his future.
Not until December of that year did we get the diagnosis confirmed -Pervasive Development Disorder otherwise non-specified, with Apraxia and Dyspraxia, from Dr Carl Cooley, at Crotchet Mountain. Mac and I also decided to implement considerable dietary change. John was placed on Gluten, and Casein free diet during the fall of 2003.
Now we are 2 years into early intervention/education, and I can look back on how much we have learned. The coping strategies adopted for John really help with Daisy. Although Neuro-typical, Daisy is like John in many ways. She also has huge sensory needs and enjoys high impact activities. We can promote self-regulation for the both of them.
We hone into every detail of John and his education. We meet regularly with his pre-school teachers who know how bright he is and share our conviction that John will realize his full potential, mainstreaming school with total inclusion by age 8 or sooner.
Currently he attends our local pre school both morning and afternoon with an one on one aide, and has just recently toilet trained (a huge deal for boys, and kids on the spectrum!) He does not take a nap and is generally making awesome progress. One of the goals on his four-year IEP is to read a story to a friend.
Mac and I, like all of you, continually search for more information to educate ourselves to better represent our children, and lead them to into a full and happy life.
There are still moments when I wish I could turn back time…. We have a DVD with videos of John at 9 months and then at 12 months old. With hindsight I could see the onset of regression in those 3 months, and looking back makes me feel rather inadequate for not recognizing "something's-up with John " before. I had left Timberland to be a stay-at-home mom, and therefore John had left the day-care there, so I was isolated. If only he'd stayed in day-care - maybe we would have recognized it sooner, if only we had put him on a GFCF diet sooner, if only we had questioned the MMR's and opted for splitting the vaccinations, if only…….
Today I spent the afternoon at John preschool. I remember back to a time during the transition schedule. John proved himself to be a fast runner (out the door) and the thought of him sitting to complete a project, or joining for a group-time song seemed absurd.
John’s teacher loves to plan special (messy) projects for me to complete with the children during the class. This afternoon, everyone was to plant a couple of sunflower seeds in a pot with their name on.
After the planting was done some children sat down, staring at the pot waiting for the something to happen.
The anti climatic looks on their faces made me glad that John and Daisy planted seeds last month. On his turn, John scooped the soil, planted his seeds, watered (drowned) them and retuned to group time like a real pro’.
Its good to know that the seeds we plant will grow, and grow, and eventually bloom, and someday maybe plant seeds of there own.
Keep on keeping on.
;D 
