Christmas: Special Needs Style

 

As I sit here this morning the taste of coffee on my tongue, I see the tree is up but not decorated. Dad put the angel on the top before he left for work this morning in the predawn gloom.
Dad is a paramedic, he saves lives for a living. Me: I work occasionally at a job outside our home but even though I hope that I can continue with it, it always ends with the same six words, "I can't watch your child anymore."

The first time I gave up a full time well paying job was when a pediatric psychiatrist said to me, "You brought these kids in to make a difference in their lives, you can't expect to do it if you drop them off at the sitters and go to work!" Ouch!

Fred had a meltdown after school yesterday, the last day of school as the holiday break begins. Too much school Christmas party, excitement and sweets, too much for his thin sensory processing abilities to handle. To top it off some sadistic parent sent as a class boy toy (that Fred received), a remote controlled truck, with... NO BATTERIES!  When he got home and opened it and realized there weren't any batteries he completely lost it. You would have thought the world was coming to an end the way he screamed and jump stomped up and down the porch then when he came to the door he would pound on the window. He couldn't get himself under control enough to hear a word I was saying, the anger management breathing we have been learning was useless. All he did when I finally got him in the house was sit in the chair, put his hands over his ears and scream, shrill piercing steam whistle screams. I got some medicine into him along the way and after an hour or so he just went quiet and said "I am calm now, can I watch tv?" By this time I was shaking with my heart in my throat wondering if he would need to be hospitalized again. "Yes, if you like", I said, he started to put in a movie then said "Can I go to bed?" Yes. It was a scary meltdown, for both of us. He's getting so big and strong now that he could really do great damage if he wanted to. When dinner was ready I went into his room and cuddled him awake to ask him if he wanted to come and eat. He said no he would eat when he was finished, I laughed and asked if he meant when he was finished sleeping, he said yea and rolled over and went back to sleep. He expends so much energy when this happens that he sleeps a deep recovery sleep.

We talked to the pediatrician when we were there on Tuesday about the times he "checks out" and we can't communicate with him at all and she is getting him scheduled for an EEG and MRI at Kosairs Children's Hospital in Louisville. Our last doctor vacillated on this, he knew Fred would have to be put to sleep for the MRI and wasn't ready to do that to him but now the necessity seems to out-way the comfort issue. Fred used to have little petite seizures that caused him to stop breathing and always meant a run in the ambulance but he seemed to have grown out of them but clearly something else is continuing.

At the end of my wonderful day my bil called, he said he was glad I was there to answer the phone because he didn't want to put it in a message that Fred might hear and not be able to understand or process well. It seems Grandma's cancer is either back or a new one has emerged. We should know soon after the first of the year which it is and what steps will be taken.

As I sit here thinking about the new day, I look around at the half decorated unfinished house and I think of my letter to Santa or at least what I would say if he could only hear me.

Dear Santa,
Please don't my little guy notice the bare tree or realize that the toys under the tree could have been more. Let him be happy with every one of the gifts he receives, let him think the little sparce  dollar store tree is the most beautiful tree in the world.  Let him know he is loved even though he doesn't realize many details in his life. Let him feel the love we have for him, please Santa put those drops of love deep within him so he can feel them within the damaged brain, the brain that was damaged by his birth mother when she chose to use alcohol when she carried him within her body.  Santa, please bring me a heart large enough to forgive her and to be able love my son without any anger towards her because of her actions. Please let the disability services except him, to bring him services in the form of camp, respite and group activities. You know how he longs for friends, how he has that need to feel to be excepted by his peers.
Santa, we need the miracle of Christmas everyday of the year to help calm his tortured spirit and think happy thoughts in all adversity, put stars in his eyes to hide my tears and worry from his sight. If this were your area of expertise I would ask that you would just use that Christmas Miracle to heal his brain and save him from a life filled with uncertainty and pain.
Santa, as his mother, I feel so unprepared for raising him, I feel like the fierceness of my natural need to protect him just isn't enough. Help me to teach him to use his strengths as his foundation when life sends him strong opposition, help me instill in him the love for others', a willingness to learn, the knowledge of the difference between right and wrong and the ability to choose wisely. 
I know moving 600 miles away from all our family and friends was the best choice for our little family but the steps have been hard and heart rending. Help us make our new home a place where we can sink our roots deep, plant memories and apple trees, where Fred can run happily and safely through the fields and paths. Starting over in a new place is scary Santa but with a bit of Christmas magic we can do it one step at a time.
And Santa while I am writing this wish list I realize I would like one more thing this year; Please spread the awareness to all women out there in their childbearing years that no amount of alcohol use during pregnancy is a safe amount and that they are putting their child at risk of a lifetime filled with uncertainty and chaos. Maybe please add to that one more tiny wish to my list; bring to the moms who adopt these kids and bring them into their hearts and homes; the gift of unending strength and love.
Thank you Santa. God Jul.
Love, Fred's Mom

Come Follow Fred's Journey

These words could have been written from my own heart:

Someone I Love
By Lori Hickman

A touching dedication to special needs children.

Someone I love relies on me in ways
you will never understand. 

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves
for things that most of us take for granted. 

Someone I love will never have the opportunities
that every child should have. 

Someone I love will need unconditional love and support
after I am gone - this frightens me to the core. 

Someone I love encounters pity, stereotyping responses, and prejudice at every turn,

because they look, act, and/or learn differently than others. 

Someone I love has needs that require me to allow
"outsiders" to have power and input in areas that
should be mine alone to meet.

Someone I love will continue to look to me for
everything in life long after other children are
able to assume a place as part of the world. 

Someone I love has needs that require more time

and energy than I have to give. 

Someone I love has needs that mean I am not able to meet basic needs of my own. 

Someone I love has needs that have become the driving force behind major decisions my family makes. 

Someone I love has changed me in ways I will never be able to describe. 

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin