Developmental Clinic Update/topic copied

I honestly dont know where to start.We were on the road by 7 am and I just had a feeling it was going to be one of those days.I was up the whole night before tossing and turning with thoughts of the developmental clinic jumbling around in my head.
We arrived at 10:30--yep--long drive but Angel didnt get car preemiegroup/sick.gif

this time there or back

I was determined to speak my mind this time--I'm not there to make friends--I'm there for my daughter!! I started off nice but the more I went around the bush on a subject the more my fire started burning. I finally looked at the neuro and told her--hey listen--I want answers and if you cant or wont give me any then please point me in the direction to the person who can give me answers.She looked shocked but then a smile came across her face and she said I like your determination and drive.She said she would talk to me from a mothers point of view and be as honest as she could.

She said she knows that Angel has a mild form of CP.She could tell it when she walked in and could tell it after she checked her over. Then she said that it was mild enough that one might not notice unless they knew what they were looking for.They might think she's just clumsy and walks a little differently. She said the CP label would not change who Angel is at all but it could change her school experience. She said she did not want to stamp a jugde me before you know me sign on Angel's forehead for the rest of her school years. She said she would get me a px for horseback therapy and pool therapy using the developmental coordination disorder. She said if we still want a MRI now then to talk to Angel's ped about srtting things up--but to her--she sees some progression from last years report and that she usually didnt do a MRI at Angel's age unless there were no movement forward at all,at a complete standstill or regression.Angel did show what she could do and I was very proud of her--in ST she chatted the womans ear off and demonstrated her eating abilities(she gave me excercises to do at home because Angel still tends to pocket her food in the sides of her mouth and forgets about it and still has a hard time biting off a piece which she thinks is still a left over fear from the oral aversion but she was overall very thrilled at her progress with eating!) then came -*test*-('")ing on how much she knew and she completely blew them away with singing her ABC's,all her colors,counting,peg board,puzzles in no time at all,spelling her name,her address,when her birthday is,how old she is,her mommy and daddys names,and so much more!!!! Then was OT--like I already knew--very delayed with self help skills but I found out some reasons why--Angel does not want to cross midline and he said he has seen this so much with kiddos with tone issues and weakness in the trunk area-she also wants to always keep her hips aligned with her shoulders and he said that also is due to tone issues and issues with stiffness in the girdle area.He is sending a report to Angel's OT on excercises he thinks would benefit Angel and we have started on some at home already.PT--the neuro came back and sit down on this one--her and the PT told me that Angel is doing well and learning to compensate well even though she has mild CP. They wanted to let me know that Angel is never catching up to her peers,she will always be behind.They wanted to be honest as they could be and thats what I wanted.They said there are so many professionals out there that give false hope about catching up but the truth is some preemies dont and Angel will be one of those.They also talked about her sensory issues and no sense of fear.It actually felt good to discuss the no sense of fear with someone who actually "got it" ya know!!!! She wrote the school a note telling them that Angel was to have constant supervision by doctors orders

There were a few times I had to get down right rude but I actually felt better coming out of there knowing I had said my piece.
The OT got a little rude with Angel because she found out he had a vibrating pen that wiggles when you write--he asked her twice to give it back and it was like she was zoned out(sensory issues--she loves things that vibrate)he raised his voice and rudely said I said now--so I said excuse me but do you have training with sensory issues--do you actually know what that look means--he kinda shut up with a red face but I didnt care at this point.It seemed some of the therapist could talk the talk(sensory issues)but was easily frustrated when Angel overwhelmed.We finally got home after 7 pm and heck I was overwhelmed

So--the end of a LONG story--no CP dx because it is mild and they dont want the schools,teachers etc judging Angel or it interfering with her school experience in any way.She did say it was our call and we could still go ahead with the ped with a MRI but it wont change anything but everyones outlook on Angel the person to Angel CP
I also asked the neuro what we tell schools and people when they ask why Angel is not caught up yet and she said to tell them to give her a ring if it was a school and if it was just regualer harassing nasty people to tell them it wasnt none of their d*mned business

At this point I am letting all the information sink in

I am not sure what is best for my kiddo
I am glad that I demanded to know answers
Just not exactly sure what to make of it just yet

Everything has sunk in

I am ok with the reasoning they gave me for not dx with CP--if she can get me the pool therapy and horseback therapy using the developmental coordination disorder then I am happy. I dont want people,schools,teachers looking any differently at Angel and sure dont want it following her around in school.I was lead to believe we needed that dx to get her the extra help but we dont.

I know it sounded a bit harsh the way she put that Angel's not catching up to her peers but I asked for that kind of bluntness--I needed to know.I will always be there for my little girl and get her all the help that I can and will NEVER stop fighting for her,but I just needed to know if and when she was going to catch up.She said with her level of motor planning issues and mild CP she would never be on the same level and fully catch up. Like I said I will ALWAYS get any and all therapies for my sweetness but I feel a little more calm as not to push so hard for something that may never happen--ya know?Its time she was just a regular kid and we didnt turn everything we do into a therapy session. I will always do the excersises that her therapist give me to do with her--but its just time to calm down--and let play time be play time and for me to be just a mommy and Angel to be a little girl and for me to quit acting like ST,OT,ST 24/7.

Angel does exel in so many areas--shes bright,funny has a personality that everyone loves and that smile just melts everyones heart that she uses it on.She is good at art,music,alphabet,counting,the mommy and me cooking class we are inand so so much more--it just kinda hurts a little knowing what a huge tomboy that she is and how she has that gleam in her eye when watching others playing sports and you can just tell how badly she wants to be out there ya know--the thing she loves the most was the thing affected

BUT--we have talked to Angel's t ball coach--she said it was a joy to have her on the team this summer and she would love to have her on her team next year.

Thanks for everyones support
Reality stinks but we are coping

Leahsmom--brownies,ice cream and a bubble bath--woohooooooo--I'm on my way