Hello, I was away from my computer yesterday so, I'm back to continue my story today.
Thank you all for the thoughtful and lovely comments you left, they made my heart feel so full.
Note:I realized as I read over the first part of my story, that I wasn't very clear about when we received the Sensory Processing Disorder diagnosis for Pony Girl. For the sake of clarity and to help with consistency, Pony Girl was diagnosed a little over a year ago.
So, what does it all mean... this diagnosis, this brave new world, this grand adventure? To us, it means finding out all we can and always trying new ways to engage. SPD is a broad diagnosis and can mean something different for every person affected by it. It has often been misdiagnosed as ADD or ADHD. Some children with SPD are on the Autism spectrum. While that is not the case with Pony Girl, (or so they tell me) I do have a family member with Asperger Syndrome and I think that background helped me when Pony Girl was diagnosed.
What does it look like? Speaking only about my personal observations with my daughter; it can look like a rainbow on some days, and like a hurricane on others. My daughter has trouble filtering information and stimulus. She receives it all and seems to need to make sense of it all at once. Young children have poor impulse control generally, for Pony Girl that is exaggerated. Sometimes it seems as if she is absolutely compelled to touch, move, run away, throw, feel, and get into everything in a 20 foot radius. It often means that she is unaware of personal danger and safety can be be a real issue.
In places of great sensory stimulus, say for instance the grocery market, she is overwhelmed with all the lights, colors, sounds, and movement. Shopping is hard, I'm just gonna say it. I have had to learn to become a sort of shopping Ninja when at the store with my girl. She's a runner, and I have learned to leap carts in a single bound, to navigate crowded aisles with the swiftness of a cheetah, I have honed my tackling skills to an art and I have gained an almost steel like resolve in the toy department, almost. I have also discovered my zen mind when my little screaming mimi draws the stares of the locals. Yup, that's me on the floor of the market physically restraining my kicking 5 year old (who has the strength of Hercules by the way), you may move along now. It isn't always that severe by a long shot but, it does happen.
Along with being easily over stimulated by sensory input, she can suffer from a lack of sensory input as well. Sometimes I have to remember that she needs to engage in "hard body work", pushing and pulling heavy things, wrap her up tight like a burrito in a blanket, squish her, wrestle her, have marathon dance parties. Her need for tactile engagement is significant, which usually means making a mess. Playing with flour and water, smearing anything goopy, rolling in the mud, shaving cream in the bathtub, etc. it's all good stuff.
Her gross motor skills are significantly affected, I mentioned before about the bumping into walls and furniture. We had a physical therapist for a while who worked with her. Now, she has just been assigned adaptive P.E. and I am grateful for that.
Our transition into Kindergarten was another eye opener. The first few weeks of school were very challenging. She was a galloping horse in the classroom, neighing and snorting while all the other kids were doing their work. She tried to walk out of the school on her own a couple of times. The cafeteria was too big, too noisy, too bright...she would eat her lunch under the table and then run away. Her learning delays were made very apparent.
To be honest, it was a difficult time for me. I had some very down days and felt a little helpless and sad. Then, I picked myself up, dusted myself off, and went to work on how I could help. As a family we brain stormed and I renewed my fierce mama ways. I was a mama on a mission! Fortunately, I was not alone. We are very lucky to have a school that is working with us. The special education team is doing their best despite underfunding and large case loads. We have all come up with ways to communicate and improve the school experience. As a result, Pony Girl is thriving. At our recent parent teacher conference, it became clear just how much Pony Girl has accomplished, how far she has come, and how much hope and excitement there is for the future. It is very clear that Pony Girl is adored, all the other kids in her class have taken her under their wing and help her in any way they can. That just makes my heart sing!
Why am I writing about this now? It is a very personal story and while I am protective of my family's privacy, it is a big part of our everyday life - I am constantly talking about it to teachers, doctors, therapists, other parents etc. and it felt a little strange to leave it out completely from this part of my life. Not that I was hiding it but rather, it felt like something was missing. It isn't what this blog is about but, I didn't want it to be something I couldn't talk about either.
I struggled for a while with my decision to share this, my hesitation was understandable. I did not want my readers to think, "Oh, poor girl." for she is hardly that! Recently someone said to me, "I bet you sometimes wish that she was just normal." The comment broke my heart a little bit; for what is normal? I have never wished for one second that my child be anything other than herself. I want her to know that who she is, is more than enough. I want to help her succeed and provide her with all I can to help her make her way. I don't want to change her and I will fight to make sure she doesn't feel less than, and I never ever want her to lose her spark.
I believe that her...
gusto for life
left of center view
and blessedly happy nature
are gifts she was given, what she was meant to have. Qualities that will serve her well through her life and will guide her to success. It is simply who she is and she is wonderful! It is my job to help her know this.
As parents, we are our child's first teachers, we are their voice and their champions. We know our children best and it is up to us to not be swayed by doctors, relatives, or well intentioned passers-by. Learn all you can, get a second opinion, be a bother, make phone calls, keep digging, ask for help. Just keep going, one day...one moment at a time. Treasure each gift and know how lucky we are.
Thank you all for coming along on this journey and letting me share a part of our life with you.