Intro

[Guest guest]

Hi ,

My name is and I live in Washington, DC, USA. I am 58 years old and

I have

had PA since at least 1994. Moreover, I had both of my hips and knees

replaced

during the summer of 1998. , you are the first person I have found that

has also

had those replacement operations. I hope you are coping well with PA. I am

trying to cope. For example, I can walk within my home without assistance

and I can drive

my car. However, I usually use a walker when going outside to help me

maintain my

balance, since last year I learned that I had osteoporosis due to taking

prednisone

since 1994. Plus, I have had two surgeries on my parathyroid glands since

1998. Also, are you still working? I chose to retire in 1999 in order

to receive a regular federal government pension.

Sincerely,

[Guest guest]

JoAnn !!!!!! Welcome. You will LOVE this list. The ladies are

amazingly informative, and all so supportive. I was going to suggest you joined

this group, but glad you found it on your own Welcome to the group, friend!

=)

From:

[mailto: ] On

Behalf Of JPBarham

Sent: Friday, March 12, 2010 12:45 PM

Subject: ( ) Intro

Hi all --

I'm JoAnn, homeschooling mom of 6 kids, 3 of whom have PDD-NOS/Aspergers

(conflicting diagnoses, but so similar, doesn't matter at this point). My

oldest is the one having PROBLEMS. He is nearly 20 years old, was diagnosed at

age 13, but we've received/found very little help support over the years. We

ended up homeschooling after he had disastrous problems in several schools. He

is very HF -- most people did not know his diagnosis. :/ We just found a new

counselor, and we're hopeful we're back on the right track again....He has

fibromyalgia, too, and is in severe, chronic pain 24/7. We are just starting a

GF diet for him, as he is getting worse and worse lately....

Too much to share, but wanted to jump in and say HI. (The other 2 are 14 and 6,

and they're both doing well for now. Thank goodness!) My other kiddos who are

NT (I think!) have quirky issues, some OCD stuff, etc. but are functioning

overall pretty well. Whew. It's exhausting. I knew my oldest was different from

the moment he was born. BEGGED for help from docs, pedis, etc. and NO ONE would

listen AT ALL for a very long time. He was in a small private school until 6th

grade, and no one saw anything wrong. He did great there: uniforms, strict

rules, small classes -- was perfect for my little professor rule follower.

We moved to a new state, put him in public school -- GASP! Everything fell

apart.

I see now, we were making accomodations for him all along, and he was NEVER

typical. I thought he was " high needs " or something as a baby

(screamed all the time, whether held or not -- nursed 2+ years, etc., but

wasn't happy, EVER).

Enough for now. Thanks for having this list.

JoAnn

[Guest guest]

Welcome JoAnn!!

From: O'Brien <nicole.obrien@...> Sent: Sun, March 14, 2010 2:59:28 PMSubject: RE: ( ) Intro

JoAnn !!!!!! Welcome. You will LOVE this list. The ladies are amazingly informative, and all so supportive. I was going to suggest you joined this group, but glad you found it on your own Welcome to the group, friend!

=)

From: [mailto:AspergersSu pport@group s.com] On Behalf Of JPBarhamSent: Friday, March 12, 2010 12:45 PM Subject: ( ) Intro

Hi all --I'm JoAnn, homeschooling mom of 6 kids, 3 of whom have PDD-NOS/Aspergers (conflicting diagnoses, but so similar, doesn't matter at this point). My oldest is the one having PROBLEMS. He is nearly 20 years old, was diagnosed at age 13, but we've received/found very little help support over the years. We ended up homeschooling after he had disastrous problems in several schools. He is very HF -- most people did not know his diagnosis. :/ We just found a new counselor, and we're hopeful we're back on the right track again....He has fibromyalgia, too, and is in severe, chronic pain 24/7. We are just starting a GF diet for him, as he is getting worse and worse lately....Too much to share, but wanted to jump in and say HI. (The other 2 are 14 and 6, and they're both doing well for now. Thank goodness!) My other kiddos who are NT (I think!) have quirky issues, some OCD stuff, etc. but are functioning overall pretty well. Whew. It's

exhausting. I knew my oldest was different from the moment he was born. BEGGED for help from docs, pedis, etc. and NO ONE would listen AT ALL for a very long time. He was in a small private school until 6th grade, and no one saw anything wrong. He did great there: uniforms, strict rules, small classes -- was perfect for my little professor rule follower. We moved to a new state, put him in public school -- GASP! Everything fell apart. I see now, we were making accomodations for him all along, and he was NEVER typical. I thought he was "high needs" or something as a baby (screamed all the time, whether held or not -- nursed 2+ years, etc., but wasn't happy, EVER). Enough for now. Thanks for having this list. JoAnn

[Guest guest]

Welcome JoAnn,,,, (that's my middle name, and spelled JUST like that!)

From: O'Brien <nicole.obrien@...>Subject: RE: ( ) Intro Date: Sunday, March 14, 2010, 1:59 PM

JoAnn !!!!!! Welcome. You will LOVE this list. The ladies are amazingly informative, and all so supportive. I was going to suggest you joined this group, but glad you found it on your own Welcome to the group, friend!

=)

From: [mailto: ] On Behalf Of JPBarhamSent: Friday, March 12, 2010 12:45 PM Subject: ( ) Intro

Hi all --I'm JoAnn, homeschooling mom of 6 kids, 3 of whom have PDD-NOS/Aspergers (conflicting diagnoses, but so similar, doesn't matter at this point). My oldest is the one having PROBLEMS. He is nearly 20 years old, was diagnosed at age 13, but we've received/found very little help support over the years. We ended up homeschooling after he had disastrous problems in several schools. He is very HF -- most people did not know his diagnosis. :/ We just found a new counselor, and we're hopeful we're back on the right track again....He has fibromyalgia, too, and is in severe, chronic pain 24/7. We are just starting a GF diet for him, as he is getting worse and worse lately....Too much to share, but wanted to jump in and say HI. (The other 2 are 14 and 6, and they're both doing well for now. Thank goodness!) My other kiddos who are NT (I think!) have quirky issues, some OCD stuff, etc. but are functioning

overall pretty well. Whew. It's exhausting. I knew my oldest was different from the moment he was born. BEGGED for help from docs, pedis, etc. and NO ONE would listen AT ALL for a very long time. He was in a small private school until 6th grade, and no one saw anything wrong. He did great there: uniforms, strict rules, small classes -- was perfect for my little professor rule follower. We moved to a new state, put him in public school -- GASP! Everything fell apart. I see now, we were making accomodations for him all along, and he was NEVER typical. I thought he was "high needs" or something as a baby (screamed all the time, whether held or not -- nursed 2+ years, etc., but wasn't happy, EVER). Enough for now. Thanks for having this list. JoAnn

[Guest guest]

Hello all,

I'm new to the group and thought I'd take a minute to introduce myself.

I have two sons, my oldest is 18. He was diagnosed with Aspergers Syndrome when he was 2.5. It first evidenced when he was 9 months old and stopped sleeping. I don't mean he got his days and nights mixed up... I mean the child DID NOT SLEEP! I tried everything. Infant seat on the running dryer, long car rides, everything. By one year he did well to nap 1 hour in every 24 hours. Days were unbearable. I had a cranky toddler who ran in circles, climbed the walls and even cried to sleep. Meltdown were unbearable. Once a tantrum began, they could last for hours, even he couldn't remember what got it started by the time he was drained and would, crash into an exhausted 1 hour sleep. Only to start the same pattern after he was rejuvenated. By two years old he could go 36 hours after a 2 hour nap. We had a few peaks to an exhausting 72 hours without sleep. Children's Hospital doubted my reporting reliability and hospitalized him for observation. Same results. They decided to do an sleep study, and were not even able to get results because after tranquilizing him, he only remained asleep for 4 hours at a time then was raring to go for another 36 hours. After this week long hospital stay he came home on Ritalin every 4 hours and Clonadine at night to make him sleep. It was the first full night's sleep the child had in over two years.

Other milestones were normal or early. He said his first word at 7 months and talking in sentences at 13 months. He read at three years. Once he started sleeping nights the tantrums became less frequent and more controllable.

He has always struggled with peer interactions and prefers to interact with one peer at a time rather in groups. He has been a Scout since he was in 1st grade and earned the rank of Eagle Scout at 15. While in scouts (age 13) he began mentoring a 5 year old Aspie/ADHD boy in the the Cub Pack after overhearing leaders discussing how they hated to see the child sign up next year...it only meant trouble. My son came to me extremely troubled and told me what he overheard. He also told me he knew how most of the leaders had hated him when he was younger and didn't want to see this little boy shunned and hurt like he was. The child was the sibling of my younger son's best friend and one Saturday play date I sat amazed as my 13 year old calmly sat with the Mother of this 5 year old and counseled her. He explained to her the thought processes of her son, and told her things she could do to calm him down when he was in a melt down. This little boy bonded with my son and the two remain friends to this day. Whenever the child, now entering adolescence has a problem he calls my son for advice. I can't tell you how much it touched my heart that my reticent Aspie took an active interest in the life of a younger child and remains available to him, even today.

graduated in June with a 4.0 GPA and began a course in Network Communications and Information Systems at a local college, where he continues to maintain his 4.0.

My second son, now 16, was diagnosed with ADD at 6 when was still unable to write his own name. I was more reluctant to accept the diagnosis of ADD for his child. He was quiet, reserved, didn't talk until he was 3, didn't run in circles or climb the walls. I could take him to meetings and he would sit quietly at the table and draw his picture for hours without people even realizing he was there. How could this child be ADD when my first son stormed into the room, chatting incessantly, and never seemed to run out of steam even on medication. The developmental pediatrician insisted that since ADD/ADHD ran in families and his brother had both AS and ADHD, that he had ADD without hyperactivity and recommended a trial of Ritalin during school hours to see if it helped him focus. Reluctantly, I agreed. It was amazing. That first week wrote his name for the first time and began completing workbook assignments.

is now doing well in 10th grade. He's not the prodigy like his brother, but holds his own. He's a social butterfly and has many friends, also unlike his brother. He stopped taking the Concerta when he was 15. I see a slight decline in his schoolwork focus, but since he is still maintaining a B average, I relented to allow him to discontinue the medication. He never really needed it other than school hours anyway.

That's basically my story.

I sure wish I found this group when we were in the struggling years with , but I trust that I may be able to offer hope and encouragement to other parents struggling with similar issues today.

Hope to get to know many of you.

Blessings,

Tricia