My son goes to a feeding clinic once a week for about 30-60 minutes as a means to help him "eat". Our length of stay at each visit depends on how busy they are and how cooperative my son is. Today was a rather quick visit, although we were there a long time waiting to be seen.
As frustrated as I can get with my son and his eating problem, I've come to realize that my son is "easy" compared to what other parents face with their own child(ren) who visit the same feeding clinic. Although my son has a genetic disorder that could have some developmental delays or issues associated with it, he doesn't and is really no different than any other child his age. He just has miscellaneous medical issues that are our major hurdles and worries. Its also becoming more likely that his eating issues are related to him having an issue with gluten.
Since he left the hospital on March 1st and we began the "gluten free diet", his eating has increased daily. Some days are better than others, but in general he is eating foods. Had he been eating like this before, we'd probably never would have even thought about needing the feeding clinic's assistance. He's also become less stubborn with his exercises and willing to try the new "flavors and textures". With the exception of him catching an upper respiratory virus a couple of weeks ago, he's really has gained some ground on eating and gaining some weight - of which I am so grateful for!
Today, while we were waiting to be seen by the therapist, several patients came in and they had various issues. My guess, from observations, the two little boys that were there were on the autism spectrum and appeared to need quite a bit of therapeutic help in many different ways. I looked at these moms and was just amazed at how well put together they seemed, but you can see the strain that having a child with special needs places on their every day existence. I look at my situation and think how lucky I truly am that our issues are so mild in comparison. There are days where I complain and today I realize the obstacles I have are nothing - my child can walk, talk, appears to be very intelligent and can communicate very well.
By all accounts, he (and I) will have a "normal" existence. Some of these children (and parents) won't be as lucky. They will struggle time and time again to mainstream. I think how these parents were waiting for their child to be born and having all these dreams and aspirations for their child - and now they know to get there they have to walk a long and winding road. I know they are thinking "will my child ever be able to do 'XYZ'"; because I still remember when we first found out about my son's Noonan Syndrome diagnosis at 5 months and not knowing what the future was going to hold. I had dreams of where my son would go to school, be when he grew-up and in one simple little minute - I felt these dreams melting away, because I didn't know how deeply affected he was by this gene mutation malfunction. As time went by and he was seen by several different therapists - we realized that he (we) made out pretty lucky. He's really a bright child that can do everything a 2 1/2 year old little boy should be doing, with the exception of the fact that he's quite short for his age and most likely will always be shorter than the average boy!
So as I'm sitting in the waiting room, I ask myself, how did I get to be so lucky? Why do these moms have to endure such struggles and my struggles aren't so bad in comparison. All I can say is that I feel and I am so grateful.
My heart hopes and wishes that all the dreams the parents in the waiting room have for their child(ren) are fulfilled! They so deserve it!
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