Needing To Stand Up

I remember the day I found out I was pregnant.  We had just come home from out east and I wasn’t feeling “right” the whole weekend.  First thing I did is run to the bathroom because I remember I still had a pregnancy test in the vanity.  My daughter was only four months old at the time I could not believe it but to my surprise I was pregnant again!!   In retrospect everything about my son was a surprise from the very beginning.  My delivery with him was nice and easy and to be honest he was such a lovely baby.  He only cried if he was hungry.  He was always smiling and happy.  He truly was a pleasure to be around but something in my soul felt not exactly right.  My son was about four months old when I started voicing my concerns to my husband. 

The feedback I got is why are you looking for problems when there are not any.  Maybe they were right but why did I have this gnawing feeling that everything was not okay.  I would bring it up to my pediatrician but I got back” he is a boy they develop slower” and “don’t compare him to you daughter”.  I let it go for few months but when he was seven months old I couldn’t hold back.  He was meeting his milestones but at a much slower rate.  He also did not move his body the way I felt he should.  I voiced all of my concerns to our pediatrician.  At that point he said I still don’t think anything is wrong but almost to shut me up he went ahead and sent in a request to an Early Intervention agency to have him evaluated. 

 When the evaluators started their process I felt a sense of relief. My journey to help and support my child was finally underway. He got approved for occupational therapy and physical therapy.  Those two services started when he was nine months old.  I also took him to see a neurologist who told me thankfully he really didn’t see anything but he was still young.  His advice was to keep up with E.I. (early intervention) and if I felt things were still not going well I should return to him within a year.  My son turned a year old and I started to advocate for him to receive speech therapy.  The E.I. people did not feel he qualified because he was so young. 

However, I was vigilant in my quest to help my son.  I read every thing I could get my hands on.  I attended various workshops and spoke and asked many questions of anyone who could help me in my journey.  I never took no for an answer so when he got rejected the first time for speech I had him tested again and he finally got approved. It was at that point that we returned back to the neurologist and got our diagnosis of PDD-NOS (pervasive developmental disorder-not otherwise specified).  This basically means he is on the autistic spectrum which ranges from very low functioning to high functioning.  Shortly after receiving this diagnosis the countless hours of therapy started.  Between the ages of 18 months and 3 1/2 years old I advocated for him to receive close to 36 hours of early intervention services a week.  It was a blessing for him but definitely a process for my family. 

Our lives revolved around his schedule.  I, of course, had mother’s guilt about my daughter.  She is only 13 months older than him and it was very hard for her to adjust to having all of these people in our home and watch them “play” with her brother.  There were times when she could be part of the therapy and other times when she could not.  The thing that helped me and our family is understanding how important this was for my son to one day be the best that he could be.  We went through our E.I. time sometimes screaming, shouting and crying but mostly in retrospect smiling, laughing and enjoying the growth of my son and our family as a whole.  We completed our journey with Early Intervention having therapist who became family. We watched my son go from zero speech to speaking in sentences.  We watched as my daughter became my son’s best teacher because no one demanded more of him than she did.

My feeling are this…we all have moments in our lives when we know something isn’t quite right.  It gives us that almost sick feeling, it repeats itself in your thoughts.  For me I felt it was God whispering in my ear ” help your son”.  I could have chose to ignore it and not do nothing. My son needed me to STAND UP and be his voice.  I am writing this for all the families who are going through a similar situation but really for us all to stop a moment.  Listen to what your thoughts are telling you.  I am so grateful everyday that I did.

 

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