United Brachial Plexus Network

BPI or non BPI issues we all need to be advocates from time to time. I had posted this on my FB page but was encouraged to share this with all of you to encourage you to stay in the game as long as you need & keep fighting for you child -


Imagine how different a young lady’s life could be if the right diagnosis was reached what seems like a lifetime ago. Since the 2nd grade we have expressed concern over our child’s learning issues. From the 4th grade on we were able to narrow it down to what seemed like listening/comprehension issues. We requested the school do testing. We were told to have our child tested for ADD not ADHD since there were no disciplinary problems in school. We agreed she needed help; however we did not feel the problem was ADD based on only having 2 of the problems from the many on the ADD list. We agreed to testing but not specifically for ADD. Since we were going against what the school recommended we were told we were on our own. By the time our young lady entered the 7th grade I knew something had to be done – why would no one recognize she had comprehension/listening issues unless I was willing to entertain the diagnosis of ADD?? I started to research her difficulties. These are the same problems I had spoken to numerous professionals about that wanted her treated for ADD – basically input does not equal output. After doing much research I found information on Central Auditory Processing Disorder. I spoke to her regular doctor about what I found and asked if she should see a developmental pediatrician. He said yes. I call to make an appointment – I’m told there is a year long wait and I have to fill out a packet of information before they will even schedule an appointment. I’m also told to get on the waiting list for every developmental pediatrician in the area. I asked why – at this point I have lost all patience and wouldn’t hesitate to question the anyone as I have a child in desperate need for help & can’t find any. Why you want to know – because their priority is helping the younger kids before their problems turn into bigger problems. Oh ok so because I have been begging someone to help me for years figure out what was wrong we are going to be further penalized because she is no longer a young child. We wait almost one full year for an appointment. A month before that appointment I get a call from another developmental pediatrician office we are on the waiting list to see and am told they are not sure what they can do at this point but to ask the school for a psychoeducational evaluation; this will hopefully provide some direction. We agree to the evaluation. Results of the evaluation are Melanie is fine with only a slight problem with math comprehension problems. What’s also implied in the meeting that maybe the problems she is having is because of the mother’s high expectations and problems are stemming from home not the learning environment. Because of the slight problem with math help through school is granted. The young lady is informed of what the school says. The patient young lady that has been waiting for answers as to why she can’t learn the way everyone else does asks for more help to be added to the school’s plan. More help is not given. Finally – appointment day comes with the developmental pediatrician!!!!!!!!!!! We are told some helpful information, then again that we need to consider ADD; however we are being sent to an audiologist to rule out CAPD. I learn there are only two audiologists who test for this disorder. I did not agree with the pediatrician’s reasoning for diagnosis of ADD with all I had researched about it before. After a month wait we get the results & I was right – Central Auditory Processing Disorder. There was even a specific part of the test where ADD was discussed and she passed that portion of the test 100%. I send the report to the school and receive no acknowledgement of receipt until I email the person in charge of special education. She tells me my young lady will now be re-evaluated by the same person who said she basically had no problem with learning just a short couple months ago & basically I’m the problem. Now my patient young lady who has been asking for help for years will receive help for issues with school work. I thank God I was given the strength to be my child’s problem, to keep looking for answers when everyone else wanted the easy cracker jack box diagnosis of ADD stuck on my child. If I was not my child’s problem she would have fallen through the cracks at school and pushed through because she wasn’t a behavioral problem. When you have a child who behaves perfectly in school, why is the parent made to seem like the one with the problem?
So my advice to you is when you receive a diagnosis for your child that you don’t feel comfortable with keep pushing until you get where you need to be. Yes, they will all look at you like you’re the crazy one but who knows your child better than you? Could you imagine what her life would be like if she was misdiagnosed as ADD??? Keep asking questions until you’re satisfied and don’t be afraid to disagree with the professionals they don’t always have the right answers. Can you imagine how different her life would be if someone would have listened to what her parents were saying years ago? I can say I’m glad I cared enough to be my child’s problem because being her problem is the only thing that has helped find the solution. I am so happy she will finally receive the help she needs that I’m not even going to wait for the Mrs. Franklin, I’m sorry you were right. When I see you and you look at me uncomfortably I will take that as my apology. Thank you to the people who have helped & supported us along this journey. Very much looking forward to the brighter days ahead.

You guys make me smile,
My Mom gave me a will to try with my birth erbs in the 50s. By my posts to on outcomes.
In my life , I did challenge a lot but , I also learned about how by a mom showing guts it really show me to be this way to all my life to. If need to know , Never fell bad that you do Having courage is a gift to try, no matter the outcome may be, by so many post to We are it seems on the path of Never giving up when we really need to know You really do have better days, There are so many post like this to
Just Thinking,
tom

WHOOOPEE CINDY!!
Yes, parents, it is a lifetime of Advocacy for your child. Do not be afraid of names or "labels", Special Ed IEP's. I can testify it DOES NOT follow your children into the "real " world of work unless your child brings it up after they leave the public school system. My son Scott,(now 42, and Now supports me!) was in the terrible education system in 3 states throughout. Now he works for the State of WA full time. I let whomever label me and him, tell me he'd be a vegetable(his disabilities are unrelated to my OBPI...(Rubella). Do whatever it takes to get what your child needs in school, therapies, and Doctors. Take care of yourselves 1st tho' so you can fight the good fight like Cindy did. Your children are resilient! and will amaze you when they see, hear you fight for them. BUT...take care of yourselves 1st, PLEASE.

"Bossy" Gramma Carolyn J
LOBPI/74 ..and still kicking but not very high

carolyn, you keep on kicking as high as you can for as long as you can. hope you are kicking for a long time.

I have never even heard of this, i have always thought our son did not have adhd, but once they are labeled there seems to be no changing minds. I looked this up on the net and this fits him to a T! Thanks sooo much for posting this we have been fight since he was 5 (he is 16 now) and have gotten nothing . iam sure we still won't get any help and with him going on 17 and all, but we will keep fight it, again thank you so very much.

The audiologist we saw recommended we read When The Brain Can't Hear. The book provides good information. You might not get much help through the school but there are a variety of exercises you can do at home to help also

Be a advocate ,
Awareness by posting, direction from trying
I will never change
Mr positive Sometimes trys really do work out but what a quest , what a mine game Best thing I have tried to do is remember trying that did work out in life , when your sad , trying something else . it may help the mental state you, may find your self in the challenges of trying dont come from a book of direction , its what we dream up to try??
There is all types of ways to look at issues of need to know or what your trying to adapt to something new It seems that moving forwards come with the next idea and the will to move on by our post no matter how or when in life they happen
Just thinking
Tom