We have been busy around here lately. Larkin is getting ready to transition into Unit 4.
When a child with special needs is born, you enter into a system known as “Early Intervention”. When a child has any kind of delay from birth to age three they are served by Early Intervention.
Early Intervention is a program of therapy. Since Larkin was a month old, we have had therapy in our home. She began with Developmental Therapy with Judy. This is a therapy by which we are taught by the therapist strategies and play to help Larkin progress. Play is a very important role in a child’s development because it is how they learn. Back and forth, pretend play and understanding how important turn taking is.
We then added in speech therapy, occupational therapy, and physical therapy. Speech begins early because in order to be able to speak correctly we have to train Larkin on how to use her tongue effectively. Occupational therapy isn’t about helping her go to work but it’s about fine motor skills. Picking up items with her pincer grasp, Using her fingers to pick up pegs etc.
Physical therapy has been fun because we have used a treadmill to help Larkin learn to walk. We learned how hard it is for her to be aware of her body and how it moves in space and what is around her. What we take for granted – is very hard for her little body to do.
We have been working with this team for almost 3 years now. Every week in our home. This team has seen me at my worst in grief, jammies and at our best with acceptance, joy, and progress. They have watched our little girl fight through not only Down syndrome and seizures but also overcome obstacles that seemed overwhelming.
Now we let go. Now they let go. We move into the next phase that is Unit 4 Early Education. This is where we start all over with a new team. It now falls to us to explain where this little girl has been over the past 3 years. Take them down a path that has been amazing at times and terrifying at others.
We will write Larkin’s IEP, Individual Education Plan, on Monday. I am in shock that we are here so quickly. Where did 3 years go??
I don’t have a choice in her building. I don’t have a choice in teacher. I don’t have a choice but to send her because that is what is in her best interest and THAT is my only focus.
Larkin will thrive. Larkin will not have separation anxiety. I have to step off the cliff and trust that these strangers will become my friends and advocates just like her Early Intervention team. Strangers now – but they will come to know who Larkin is and who our family is.
I am an advocate. I am a community advocate. I am a momologist. I know this child and I know what she needs. They must listen because Larkin’s health hangs in the balance. We have worked very hard to get this child to where we stand today. Her Ketogenic diet and medications are working. A simple slip of a bite of cookie will destroy what we have worked so hard to achieve and more brain damage begins anew.
While I am all of the adjectives in the above paragraph, I am a team player. I will help Unit 4 every step of the way because above all else I am Larkin’s mother.
I’ll keep you updated on how it goes. The biggest challenge is to help this new team understand how important it is that Larkin have direct and constant supervision. They will do well to listen to me. They will do well to pay attention. There is too much to lose for all of us, but most importantly for Larkin.