Sunday, November 21, 2010
Inspiration this Thanksgiving
Since it is Thanksgiving, I thought I would give you a glimpse of some of the many notes and letters of encouragement I have received. I am so grateful for everyone's kind words. They keep me inspired...to be a better mama and keep fighting the fight. They are in no particular order, just numbered.
I've been away from FB for a while, and just seeing your posts about Luke. I just wanted to let you know that by just reading your posts and blogs .... I can tell that you are an amazing mom doing an amazing job raising him.
I can not say that I know how you feel 100% ... but I did have to put both of my boys through speech therapy for much less issues than you are dealing with ... but did have to deal with out of pocket expenses because of insurance companies thinking that head injury, etc was necessary for payment.
I completely feel your statement on how people want to put their two cents in and say .... well my child had this. And that is certainly not my intention.
I just soooo feel for you and can somewhat understand your frustrations. It seems like you have a lot of faith and trust in God .... and I admire you for that. Just continue doing what u are doing ... being an amazing mom!!
Prayers are being sent your way.
Well, I know you know early intervention is key and it's hard in a small town in the South. I'm not sure the level of care is there as there's fewer people for the DR's to see and learn from.
I don't know if you know that _____ was in speech therapy for 3+ years - not apraxia but articulation disorders and it was only that _____ has that set-up with the VSU Speech college, that I was able to get speech therapy.
Plus, _____ needed glasses for amblyopia and I didn't know. Like you, I had my concerns from an early age. I had that kid at the eye DR from 6 months old and discussed the limited garbled speech with our DR and was told everything was fine because of hitting all the milestones. That still makes me mad.
That year we lived in ___. I grabbed every option I could. I got her in a music therapy class, a Montessori preschool school, and a Spanish language playgroup and gymnastics. All of that, plus an observant mom who told me ____ was cross-eyed when she colored probably saved my kid's literacy.
So, keep on plugging away and keep building all of the options and interventions you need. That's one bright, engaged and energetic kid in your pictures. It takes a good momma to help their child wire their brains to utilize their own unique skill-set, too.
I'm sure that's what we accomplished with ____ and so will you. I'll be interested to read of Luke's progress and will be reading your blog!
_______ sent me the link to your blog and I want to let you and Brad know that I am praying for all of you and hope that Luke's upcoming therapies start him on the road to finding his voice.
There is nothing more heart wrenching than worrying about your child - I cannot imagine what you are going through.
I am just so grateful that God provided this sweet little boy with someone like you to be his advocate.
I did medical malpractice defense work for years and the one thing I learned doing it is that you have to seriously advocate and persist when dealing with doctors. You would love to think that every doctor had the time and inclination to do everything they can for each patient, but that's not reality.
Whenever I have a friend who is self-conscious about being pushy or aggressive with doctors, I always tell them that they are not there to make friends. They are there to get the best possible medical care for themselves and their loved ones. It is truly a situation where the squeaky wheel gets the grease.
All of this is to say that I truly believe that God put someone like you in Luke's life for a reason - your persistence and determination and unwillingness to take no for an answer are exactly what Luke needs - and exactly what is going to have him talking in no time!
I hope that this holiday season brings progress to Luke and peace and happiness to your family.
I just wanted to let you know that you are in my thoughts and prayers. I just read your blog this week.
I was unaware of the struggles you are going through. I can not imagine what you are going through with Luke and the frustrations with the treatments.
I am thankful for Luke that he is blessed to have such wonderful parents. I am confident that he will find his voice.
We haven't been officially introduced, but have chatted via discussion board! I'm a mother of three, my youngest of which is 4 1/2 and has CAS. I just thought I would touch base with you, and possibly give you a bit of additional hope for Luke!
We didn't receive an official diagnosis of CAS until my son was 3 and we started PROMPT based speech therapy when he was 3 1/2. Have you heard of PROMPT therapy? We have been in multiple speech therapy sessions per week (4) with 1 or 2 of them being PROMPT based. When we started, we really only had maybe 20 partial words. Over the last year and 1/2, we have had so much improvement - he speaks 4+ word sentences regularly, asks tons of questions, tells me what he is doing, and will initiate conversation with his classmates at preschool. We just started OT this week - he didn't qualify with our public school system, so we have started privately.
It has been slow going, and some ups, downs and some slow days and some where he is jamming in putting conversation out there.
If you are able to pursue PROMPT therapy (their website lists therapists in different areas), it has worked for us!
Good luck on your journey to the Kaufman location!
Thanks for all the support~keep those prayers and notes coming~they keep me going :)