Saturday, September 13, 2014

Being an advocate for your child is exhausting

Super Saturday this week has not been so super!

Today I'm discussing a challenge I have had this week. As all mothers know being a mother is wonderful but very challenging in so many ways! I'm the mother of 2 boys the "normal"child is my youngest and my first son as I mentioned before was born with many heart defects. Although his surgeries have "Fixed" his heart he has other issues as a result of two heart surgeries and other things that we go to doctors for.

One of the many these delays in my son Shane is  Torticolis ( a shortened neck muscle on one side of the neck that causes my son to tilt his head toward his left side) this is very minor and can be helped easily with physical therapy. Due to sitting in hospital beds in one position for quite a while and the way Shane was positioned in the womb as a baby he tilted his head often. We started physical therapy  when he was around 3 m old as nurses brought it to our attention in hospital. After quite a while of PT it would strength in and his head would go straight. Every time he would learn something new like walking though it would come back. Once again I take him to PT and it would go away.  We eventually got enrolled with early intervention(a school district/government program to help babies -3 yrs with special needs or delays) for Shane's speech delay and asked if we could get Shane looked out from a PT in the program. A PT came out and looked at Shane this was around April or so of this year and at this time Shane was only "tilting" when tired or really active. The PT said it wasn't sever enough to treat at that time.she also gave me some tips to help stretch that muscle a 2 1/2 year old way. Pt excercises are very easy when they are babies,but when they are bouncing 2 1/2 year olds it' gets difficult to stretch it the way you did when babies. I was appreciative of the tips and continued doing what I could to help my son. as time has gone on it has become worse than earlier in April. He tilts the majority of the time not just when he is tired.

  This is where advocating for my son comes to play... Since Shane tilt got worse I brought it up to his speech therapist again and she discussed it again with the PT. Without even coming and looking out him again the PT denies treatment and encourages us to see our pediatrician and discuss it with them. Well if I bring this to my pediatrician he will just refer me to PT.  Early intervention says that because   Shane tested at normal gross motor skills and the tilt doesn't affect his "well being" or affects his daily life then they can't treat him. Ok yes maybe this is true that he is a good natured kid and it may not affect his eating or drinking, but during his sleep study last week they said torticollis could affect why he is waking and gasping at night. In what world is walking around with a head tilt "normal"? I'm sorry I would probably have tons of  headaches and pains if I walk around like Shane does. Yes I could  take him to a PT through our insurance, but that will cost me money I don't have. That's why we have these great programs like early intervention isn't it? So kids don't suffer because of lack of money. I have wanted to cry and scream this week it's exhausting!

. I'm just a mom trying to get the best treatment for my son and it's frustrating when he gets denied because it's not "Sever" enough without even a glimpse in months! I don't know what my next step is.
I have been through way worse things with Shane and I hate to complain, but I'm just trying to do what a mom does for her child!

  This week I have learned that I will always have to probably fight for Shane his whole life or at least till he can in 17 years!:)  I fought for him as a baby too, but as he gets older and going to join the world soon in preschool and later on kindergarten he will need an advocate to help him with his delays. I keep praying for strength to get through. The Lord gave me Shane and has a plan for him or he would of already been gone from this earth and  joined his Heavenly Father. The Lord I know will give me guidance and help me lead his child that he so preciously in trusted me with his care for a reason.  Never give up the fight moms!:)


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