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doctors, therapist, nutritionist Vent.

post #1 of 3
Thread Starter 
I. have. had. enough.. test after test, appointment after appointment, needle after needle. Doctor after doctor doing the same exact test as the first time thinking they'll get a different result. Treating my 18 month old child like a voodoo doll. occupational, physical, vision and feeding therapy 4 times a week! I am stressed, I am tired of our life revolving around doctors and appointments.. We know no life other then this!! I FEEL like we are being controlled by these professionals. My daughter had a stroke during birth because of a doctors mistake causing her cvi, eating problems, development delays, weakness in right side of body but she is healthy and growing! Yet the doctors feel to continue doing genetic testing over & over and any other test to try finding something else to blame for the cause of her stroke. Just to save another doctors a**! would it be so bad of me to cut everything out other then what she really needs? Like a monthly check up for growth and vision, cut therapy down to twice a week? I want to say enough, no more. This is it!! But if I did it wouldnt feel like im doing enough to improve my daughters development etc.. is this a normal feeling for parents of special needs or am I just going crazy??
post #2 of 3

I think it is really normal to question what is necessary and what isn't, and to want to protect our kids from unnecessary medical procedures. 

 

Some moms create a 3 ring binder to organize all the info and test results, and then carry it with them to appointments. You can say NO to anything that you want to, and saying no to repeating test in hopes of getting a different result seems very reasonable to me. After all, the definition of insanity is doing the same thing over and over expecting to get a different result.

 

I'm a big fan of therapy, but it is impossible to say which ones and how much are really going to benefit your child in the long run. My life revolved around therapies for a while, and for me, there was a grieving process that parenting was nothing like I had expected it to be -- so many of the joys were missing and in their place were so many difficult things. I spent time in therapy (as in seeing a counselor myself) coming to terms with it all.

 

Is there an option where you live where she will eventually start at a preschool that has all (or most of) the therapies available there? 

post #3 of 3

I am limited on testing and diagnostic procedures. I accept the ones that I truly feel are worth it or might provide an answer we need and refuse the rest. We still have feels like so many specialists, some are a one time thing, others we see several times a year or even every 1-2 years to manage DS1's care as he grows. That is what has been there hardest, adjusting his care or seeking out new, good specialists as his condition changes. I don't always need to know "why", which for us is still unknown. We do a lot of therapies though, that is where I see the most benefit and improvement in his life skills. Feeding therapy, OT, PT, speech, social skills as he gets older and wants to interact with peers, all 1-3 times a week.

 

:HugIt is a juggling act and not easy. Often I feel that everyone suffers and no one benefits becaus of our insane schedule. I do have 3 other children besides DS1 though. Today is a brain MRI that he needs. Last fall it was living away for everyone else across the state for several weeks so he could get specialized treatment. I still take one day at a time but slowly, he is getting older and bigger, making improvements along the way beyond my wildest dreams. 

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