“Neither snow nor rain nor heat nor gloom of night stays
these couriers from the swift completion of their appointed rounds”
You may recognize these words from the unofficial creed of the postal service. Yet when contemplating the struggles we face as autism advocates for our child, it’s rather fitting for us too. Another door was just closed in our face as we learned that despite our best efforts thus far in following procedure, the much sought-after in-home ABA therapy services are not covered by our insurance.
Gloom of night.
However, according to the caveat statement in our policy, the state may choose to cover a service as an exception in some cases. I don’t know the requirements for them to make an exception, but I’m about find out and proceed to test them all until every possibility is completely as exhausted as I am right now. But going along with the above metaphor, I have a responsibility – “appointed rounds” to my family, in particular to my son, to give him what he needs to function at his fullest potential.
Sam is on a couple waiting lists for services. He is on the Autism Waiver list for MD, which won’t take effect for another couple of years or longer, depending on how many participants they are able to grant services to each year. He is on a waiting list to receive an autism service dog from the Hairy Angel Foundation, a non-profit organization founded by Fran Elliott in Sedona, AZ. They breed golden retrievers and send them to puppy raisers/trainers for a year and are trained to respond to stimming, seizures, every public situation, as well as trained in search and rescue since kids with autism tend to wander easily. It is a service provided free of charge! The only exception is travel costs. She hopes to have a litter by this Christmas, and the earliest a dog would be provided would be nine months from then. Sam’s 7th birthday is in August (kids must be age 7 to qualify for a dog), so a trip to AZ and a new addition to our family is in the planning for next fall.
He receives OT and speech therapies in school, and he has a special ed teacher work with him both in the classroom and one-on-one, in addition to a para-educator who is in the classroom full time to aid him whenever necessary. However, none of these services aid with behavioral interventions, or functioning in his home environment. That is why we are seeking extra services. We don’t live at school; we live at home. Sam might spend a great deal of time in school, but his home is the environment that is the most constant and stable. If he is unable to function well in the most stable environment, how can he be expected to function well or better in an unstable environment such as school with changing teachers, changing routines, new classrooms, subs, unexpected days off because of snow or several days off due to holidays?
The renewed search for services began two weeks ago, and we still have not made any progress. No ABA services are covered. Of the covered occupational therapists in our area, none of them work with children with autism or offer sensory integration of any kind. Of the ABA therapy services that are available, we can’t afford the close to $2000 fees per month. Of the services he receives in school, none of them aid him in his function at home behaviorally or emotionally.
Talk about “gloom of night” – I am so tired of making these phone calls to people who cannot seem to offer any true help of any kind, other than to confirm that there is no hope. I would love nothing more than to crawl into my warm bed, snuggle under the covers and close my eyes to a world I pray does not truly exist when I awake. Yet nothing will stay this courier from the swift completion of her appointed rounds.
I WILL make the phone calls.
I WILL exhaust every possibility.
I WILL do whatever is necessary to provide for my son.
I will CHOOSE compassion when he screams in my face.
I will CHOOSE to love anyway when my affection is not accepted.
I will CHOOSE to delight in the gift of Samuel, an image-bearer of the Creator God.
I will THANK God for my son.
I will THANK God for my role as a parent.
I will THANK God for the trials that refine me and perfect my faith
I will PRAY for strength.
I will PRAY for wisdom.
I will PRAY for Samuel to love God with all his heart, soul, strength and mind.
And through all of this, I have HOPE.