Re: Joan (Cin.'s trip)

[Guest guest]

Hi Joan & all,

HUGS! HUGS! Definitely correct about Dr. and the entire team at the

Cincinnati Children's Hospital Medical Ctr.. they were just marvelous caring

people. Coming from many whom we confronted in the past that some people who

probably care more about taking your money than helping your child. Not here,

they were operating for my son's best interest.

Well, if you tripped or your ears were burning, obliviously you were mentioned.

: ) Dr. and Melinda were so cool and we just hit it off. Yep, we could

of yak yak all day if we had the chance.

M. Franer, MSN, RN, CS, (behavior specialist) she too spoke highly of you.

As a matter of fact they told me to tell you hi and what a wonderful person you

are, etc. and had asked if I was attending the 2004 NDSS National Conference

this coming July 22-25th in Washington, D.C., (www.ndss.org)? Dr. said

she'll be seeing you there. I must of missed this info on the conference or I

would of probably attended if I had known ahead of time. They were in awe with

everything I had to say and of course observing , despite losing my

information sheet of everything I had wanted to bring up or ask, they made us

feel comfortable. They just fell in love with . He was such a gentleman in

his best behavior. I told them I only knew you cyberly and could not wait to

meet you to whom I am forever grateful to or would not be where he is at.

I told them exactly how and when I came about 's changes and I kept

praying for answers and none of the medical or educational professionals were

able to help me out, especially when he had turned 12 y/o, getting stronger,

taller, not toilet-trained, non-verbal, lacked self-helped skills, etc. and his

behavior was really becoming an issue. I had mentioned when I ran across your

Disability Solutions newsletter, my prayers had been answered to some extent as

now it was finding a professional in either field to help me out with my new

discovery. How I had gotten addicted to the group list that you moderate and

learn from of how there were other resources available and of course I am not

alone anymore. Continuous educating myself by attending numerous conference on

AU, workshops, reading books of AU, etc. finally had the label included when he

was about 14 y/o it had opened another door towards learning about Autism. Well,

you know me I could go on and on with this never-ending story but overall Dr.

said to continue doing what I'm doing and that I should advocate San

which is behind in a lot of areas. Of course many here are money hungry

too and its like pulling teeth to get something unless its who you know but

still lacks a trusted professional. Another thing was that the school district

need to consider 's primary first dx is autism. She had mentioned that on

her evaluation report that she would recommend Respiderol and leave this open

for if ever needed. highly recommends for to continue with the

ABA/VB Therapy and not to go the med route yet as she was so impressed with

. Melinda said that she did not feel like charging us for what I already

have accomplished but will write a report with her opinion and that has

potential. I was parroting back, " potential " !

I needed to be pinched with everything I was hearing.

The audiologist, which for the first time stucked it out for the entire

evaluation, verbal report was excellent and he cooperated great! I know in a way

they probably felt like what more could they have done as I have already have

done so much for him as they told me, in reality the fact of what they know as

they specialize with the dual dx adds more weight, good support to back it up.

I'll be waiting for the evaluation report to be mailed off to me, can't wait. We

are also waiting on the blood work results for CD and Thyroid which was also

done.

Oh, before we were heading out the door Bonnie, Melinda and told me to

continue emailing them with questions or whatever needed. : ) I loved that my

dh was impressed on what they were telling us. Which is another story but he is

coming along and loved it!

We had a nice stay out there. Yes, bummer that it did not work out in meeting MB

and her family, but I do understand and its the thought that counts. Glad to

have had the opportunity to speak to her over the phone, though. She is such a

sweetheart and of course we connected. Who knows maybe I'll have a chance to

meet her and the family in the near future as I may be traveling out there now

knowing about Dr. and the team. Out trip leaving here to Cin., to

South Bend then to Chicago then to Cin. then back home was wonderful as we did

not experience any behavior battle issues he was awesome the entire time.

Despite flight cancellations & delays. To me it was well worth the trip. I had

my tape player in my bag to audio tape so that I would not forget a word from

them and got so wrapped up with their input that I had forgotten to record.

During our enroute trips to and from we had numerous people approaching us and

complimenting how well behave was because they too had someone in the

family with special needs and there was no way they would travel with them due

to their behavior issues. My dh and I of course thank them and told them we

understood as we too have been on that boat and it took us some work, etc. Our

journey is still not over but a relief to know where he is at not and how much

he can do. I guess I do need to have some cards like Louise had suggested

because they had asked if I had an email address and some I did give out with

time permitting. It almost felt like we had a celebrity and loved it!

The ARC here in San has invited me to one of their workshops on behavior

topics, then another meeting with the The Sensitive Child support group with

Wilbarger, MEd, OTR, FATOA Sensory Defensiveness. To me it was music to

my ears as I'm looking forward attending. Have to continue with my never-ending

learning.

I do apologize this was pretty long but had to kinda of give a brag updated

news.

Many hugs!

Irma,15,DS/ASD

Re: Was still here/now MB and Irma

Yes, do tell!

And Irma? How did your meeting in Cincnnati go? I wish

I had realized this before you left. I would have sent

a message with you for Bonnie and Melinda (clinic

director--all too funny).

HOpe to hear from one of you soon.

j

[Guest guest]

Still here, back and forth catching up on my reading my messages. You got it on

Wilbarger's contact info.

You're more than welcome to share my experience out at the clinic. I did thank

them graciously and told them to continue making a difference for many like

's. Well, even if you do not remember she certainly has heard of you

so you are top of the list on her book. I did see that on Melinda being a fun

person to hang out with or just being in the same room. That does add some spice

to life. : ) did warm up to everybody and cooperated nicely with everyone

and that is a big plus in my book.

I do know that Bonnie and I think it was who said they're not to keen of

flying as they told my dh.

Boy can I relate during those moments when we feel like we let them down. Nah!

They too are just typical boys with hormones with needs and will express it in

many ways. We just need to continue learning their groove.

During one of my visits out in Elkhart, Ind. one of my sister-in-law is the

school nurse at a High School and she could not wait to give me a tour. I ended

up visiting the Special Ed (self-contained) room. Just loved it! I wished I

had video-taped the classroom.

The kids were about to have their lunch. The set up was nice they even had it

set up for any sensory input, something I'm battling with the High School

is attending. Like a tent, bean bag to name for now. There was also a young man

with Down syndrome and autism as I was told and then the staff had pointed him

out and he was waving away. Of course I waved back with a smile. They told me he

has come a long way, behavior wise. Along with the other students coming over to

greet me and were all interrupting in a nice way, saying " she is so pretty " boy

they know how to butter-up a person, then had asked if I knew Spanish? I

responded yes in Spanish and they giggled. Thought it was so cute. They told me

that one of them normally does not warm up to people that quick. Maybe they can

sense. When they found out about the staff said I should of invited him.

That was thoughtful. I know it made my day to see such a school staff that

understood and worked great with the High school kids and even provide on-going

programs for after graduation. Then my SIL and I headed out to a clubhouse to

meet other school nurses from various schools who end up meeting once a month,

lovely luncheon gathering. Then it was off to the stores to spend and shop till

we dropped while our dh's had stayed home with , relaxing.

Too much temptation, though on leaning that way if I ever decided to move out of

Texas. Eh, one day at a time and pick and choose my battles for now.

One of my BIL invited us to go out boating they live out by a lake and it was

pretty relaxing but what I liked the most out of it was that his Uncle let him

drive it. He actually did pretty good. I did try to take pictures of every

activity that was involved with.

He had his own luggage on wheels that he wanted to pull and his DVD Player

hanging over his other shoulder, he did not want anyone helping him, he was just

a great traveler to see!

While our visit to Cin. we did get a chance to hear and see the Cicada's that MB

had mentioned about. Everywhere we went it was talk of the town.

Well, Joan I hope everything works out for you and your family during your

recovering time. You too need to take care of yourself. Prayers that all will go

well. Andy will be Andy. He will continue being himself before, during and after

your surgery. Plus you deserve some rest to re-energize for next month's

conference. Hope your sons graduation went well, too. Take care.

Irma,15,DS/ASD

[Guest guest]

Irma was so good to hear of your visit to Dr. . It helps to

have someone validate everything. Will be interested in her final

report. Hope she gives some good recommendations that the school can

use to help support you. Louise

[Guest guest]

In a message dated 6/12/2004 6:33:37 PM Eastern Standard Time,

ICANFIELD@... writes:

They just fell in love with . He was such a gentleman in his best

behavior.

Great news Irma!!!!! I'm so happy to hear you had such a successful trip.

It feels good to know that you are doing the right things with your child,

doesn't it??

{{{{hugs}}}}}

Donna