One thing I absolutely cannot stand is an ignorant person. Unfortunately, James David's spina bifida has put me in the path of many ignorant people. People who make comments without understanding his diagnosis are always a joy. Plus the oodles of people who look at me like I'm a horrible mother and make snide comments about me letting him lay too long and him rubbing the hair off the back of his head. Hello! It's shaved! He's had surgery! There is a scar there. But my absolute favorite, are the people who are supposed to be helping him. Their job is to improve his quality of life and the are completely ignorant to him and everything about him.
Today was the biggest let down. I was super excited to make out his plan for Early Intervention so that we could start his therapy and begin working on our goals to get him to walk one day. However, when the lady arrived I quickly began to realize this was not going to be pleasant. She could not even remember James David's name. She was at my house a total of 30 minutes and asked his name at least 10 times (that is not an exaggeration). She failed to even look through his file before coming to the appt and did not even know his diagnosis. She went on and on telling me how Hydrocephalus is supposed to slow kids learning down, but shes seen so many children do just fine with it and didn't expect James David to even need the full 3 yrs of therapy they offer. I wish you could have seen her face when I told her that he had spina bifida as well. All she could say was "Oh... Well... Ok..." and then went on with the paperwork. The "plan" we were supposed to be drawing up especially for James David and his needs consisted of her taking a sheet of paper that contained all the milestones that normal 3 and 6 month olds are supposed to meet and copying it into the plan. Don't get me wrong, I want James David to be "normal" and meet all his milestones on time, but this was not at all what I had in mind for devising his plan. She left telling me that I was the only reason she had to come into work today (God forbid).
I Just do not understand how your job is to coordinate a plan to help families create a normal life for their child, and you not take your job seriously. Why do so many people lack passion nowadays?
Also, I wanted to be sure to thank all of you who took time out of your day today to pray for all the spina bifida kids, their families, doctors, obstetricians, and support groups out there. Unless you are put in this situation (something I would never wish upon anyone) you will never understand how much your thoughts and prayers mean to us. Thank you all so much! God Bless.
I'm so sorry Britt. That just sucks... When we started Tallen's a long time ago it was a little scary. Tallen was born with a heart defect that caused him not to get enough oxygen to the brain which caused him to be a little on the slow side developmentally. Developing the plan included an speech therapist and an occupational therapist. Almost three years later he is only 2 months behind on speech and fine motor skills praise God! But the key(and you have already picked up on it) is the therapists. We had two before the one we actually stuck with. Neither were very nice or even seemed to care. So I called the Learning Center(thats what it is called here) and I told them that I was not satisfied and they sent me their best... and that she was! You have the right to do that. Make sure that if you are not comfotable with what is going on SPEAK UP!!! Ask to talk to the manager... I promise they will listen, because if they dont they can get into alot of trouble because they are mostly state funded. We are now starting the early intervention process for Ashten. He may possibly have a mild form of c.p. but while we are waiting for all the tests to come back we are going ahead and starting with physical therapy. I am so lucky to have been assigned to the same therapist as Tallen had. Long story but I hope it helps. I can only very insignificantly understand the long road ahead of you but if I can help ever let me know. I would love to send you some baby stuff for the littlest mister man. send me your address. You and James David are in my thoughts and preayers! Love you!
ReplyDeleteLacey
www.3guysagirlandansuv.blogspot.com
I think the hardest thing about being a new mom with a special child is being confident that YOU know best, but it truely is the case. God chose YOU to be James David's mom. God TRUSTS YOU to make the best choices for him. And YOU CAN DO IT! :)
ReplyDeleteYou ALWAYS have a right to request people who work well for YOUR FAMILY and your child :) I know... I have been through so many workers, therapists and aides in the last 10 years, but you know what? This is OUR life and I am only willing to fill our life with people who resepct us, are willing to help us reach our goals, and fit in with US! I jsut fired an aid this week.... because she would not be silly with my son. Seem off? Not if you know my son :) and I do! Silly will get him out of a rage moment faster than ANYTHING... so he raged A LOT when this aid was here, all because she wouldn't go to the silly side.... so she was not a good fit for us. And that is OK, because 1) I know she will be a good fit for someone else and all parties will be happier, and 2) I know the tone I want in our house and am willing to keep looking for the right person.
This is a new journey you are on, and I am so glad that I found your blog! Your son is BEAUTIFUL and I look forward to praying with you, and watching his journey unfold!
Blessings to you :)