When Griffin was officially diagnosed with Benign Hypotonia in September by a neurologist, we knew a long road of physical and occupational therapy was in store for us. He had already participated in in-home physical therapy for about nine months, but officially knowing there was a reason why Griffin struggled to climb the stairs, run, and jump, helped us better understand the previous why’s and where we needed to go. It helped us understand the need for patience as Griffin struggled to catch up.
When you observe Griffin most do not realize there is anything wrong. He looks normal, but upon closer examination, when he is physically active, you might see what we see. Griffin did not walk until he was almost 20 months old. At the time we just thought it was because of his size and weight. Hindsight is 20/20 as they say. When the tiniest of steps Griffin could climb up on his own or run or jump, we knew something was not right. In August we learned Griffin, as a just turned three year old, had the gross motor skills of an eighteen month old.
Twice weekly physical therapy began immediately along with weekly occupational therapy. Goals were set for Griffin and benchmarks to achieve were set.
All along James and I have said we can handle this diagnosis. There is hope. The best professionals have told us Griffin will catch up within reason. No, he will never be a star athlete, but he should “fit in” among peers. In reality that is all I want. My children do not have to be rock stars at anything, but feeling exluded or like they do not belong is more than I feel I can bear. We are commited to providing him the services for as long as he needs to reach these goals. We will do what it takes and re-evaluate as we go. How long it takes is unknown at this point.
One of my personal goals and measures of improvement for Griffin has always been his ability to jump. Each week in various ways we see improvements and progress in Griffin’s muscle tone, but his ability to jump has always been out of his reach. I have repeatedly told his physical therapist the day that Griffin jumps I will probably start to cry. Jumping is a such a wonderful part of being a child and I hate that as a 3 1/2 year old, he still struggles to accomplish this. He has been getting very close with only the tips of his toes not able to lift off the ground at this point. Close, but not there yet.
Yesterday Griffin was furious when a beloved stuffed animal was taken away for not listening. The irony was as he cried and pleaded with his arms waving in all directions, he also was motioning to jump and getting SO close. I told James Griffin needs more temper tantrums to help him practice his jumping skills. 
About thirty minutes later when the devastation of no pillow pet has subsided, Griffin and I were practicing the jumping motion. And then it happened, He JUMPED with both feet off the ground. It was brief and it was only once, but he did it. The benchmark I have been waiting for! Thankfully James also saw it (or I would have second guessed myself). We both screamed with delight. And whereas I thought I would cry, instead I ran to him scooped him up and I jumped up and down holding him. “You did it! You did it! You jumped!” He was so proud. We were so proud.
Although Griffin has not been able to replicate that jump again, that is OK. I know the day will come again soon and maybe next time it might not be one jump, but over and over again. After all, our hopes for him are slowly but surely turning into reality. And for that, we are beyond grateful.
And I’m crying….tears of joy! Yay for Griffin! We love you!
That is GREAT NEWS. We are so happy for Griffin, James and you. It appears that
there really is a light at the end of
the tunnel.
BTW, this is the best news we have been exposed to in the last two weeks.
Thank You,
G&P
Your son’s story sounds very similar to my almost 11 year old. Please feel free to contact me if you want to connect with someone who has been down a similar path.
Sharon,
I would love to connect with you if you would be willing to leave your email address. I do not know anyone else who has a child with hypotonia. Thanks for reaching out!
Melanie
It’s been a while since I’ve been able to catch up on reading your blog and I was so happy to read this one!!! Yeah Griffin!!! So proud of him!!!