There is a little wicker doll cradle on our front porch happens to be the favorite place for the barn cats to snuggle up in a snow storm. I bought it at an estate sale when my girls were tiny, back when we lived in a neighborhood and I went to estate sales. It had belonged to a girl born with a severe mental handicap. We would often see her and her elderly mother, walking hand in hand around the neighborhood. The mother’s face was etched in wrinkles, her daughter’s middle aged, but had the innocent, ageless look of one who had never had to worry for anything. Now the house was empty, and I wondered briefly what had happened to the daughter. Where was she now, while strangers sifted through her parent’s worldly goods.
I bought a doll cradle.
And I wondered.
Now I see things differently.
We have parents come to our farm, desperately seeking help for their children. Their children were born "neurotypical." Normal. They passed their developmental goals with flying colors. Then one day the light flickered and went out. A diagnosis of Autism. Age, 1-2.
Then there's the normal child, neurotypical, that sucessfully passes the scary age of autism, and his parent's breathe a sigh of relief. Their child will be fine. Autism is for someone else. Their child is "fine."
Then one morning their 4 year old, 6 year old, 13 year old, 15 year old, wakes up and everything changes. In the blink of an eye, the child they took to baseball and cheerleading suddenly can't leave the house. Can't eat. Can't stop washing her hands. Hallucinates. Rages. Has crippling anxiety. And everything changes.
But their momma's never forget that light.
And they keep fighting to bring it back.
I remember watching Rain Man, (not because I was autism aware, but because, hello, Tom Cruise in the '90's) and wondering what this rare, sad disease could be.
Autism rates were 1 in 1,000 in the 1970’s and 80’s.
Fast forward to today. Autism rates are now 1 in 41.
Let that sink in.
And now this new, controversial, misdiagnosed PANDAS disease, affects 1 in 200 children. A statistic that sadly won’t be altered by the young boy who killed himself during a brain-on-fire flare that overtook him a few days ago.
I’m no mathematician, so you tell me, how many families are there that are still left untouched by Autism or PANDAS disease? And where is the outrage? Where are the petitions? Why aren’t we demanding and funding research into WHY these rates are skyrocketing? WHY these diseases are stealing our children at alarming rates?
The same numbers of children have PANDAS disease that have pediatric cancer.
I have mothers stand in my kitchen and tell me in tears they wished their child just had cancer. I understand. I was that mother. I was the one in tears who told her husband, "Maybe it's just a brain tumor." And I was serious. Something they could just cut out and my little girl would be back.
These mothers don't post about it on Facebook. They post about football games. And recipes. And pretty Christmas family photos. And pretend everything is ok while life falls apart.
If you know that family who’s little son took his own life, support them, the same way you would support a family who’s child died of cancer.
You say “but that’s different.”
You’re right. The family who’s child died of cancer had support through their journey. They shared about it on Facebook. Their church family prayed and visited and held their hands. The doctors offered solutions, and treatment plans. Their insurance didn't tell them it wasn't covered because they don't want to have to pay for IVIG, or plasmapheresis, and forget about alternative treatments like donkey milk or homeopathy or...gasp...the grocery bill for the paleo and organic food their child desperately needs to heal. No one sets up a go-fund me to help their mortgage that's falling behind because the mother had to quit her job to stay home with a child that can no longer leave the house.
The family of the child with PANDAS probably never told anyone but their closest friends about their child’s disease. Their pediatrician may have dismissed them. Or misdiagnosed their child for years, resulting in brain damage beyond repair.
You’re absolutely right. It’s different.
There are walks and fundraisers and multi million dollar pediatric cancer hospital wards.
And there are families housebound in silence, without answers, or hope, or a friend that understands.
It’s definitely different.
I get emails nearly every day from parents asking for help. Parents that never would have dreamed they would resort to donkey milk, but everything else has failed them. And they don't know where else to turn.
I go to church and I see the toddlers and babies in the hall, and their mothers holding their hands as they learn to walk....and I wonder which ones will it be?
Which one will one day be so crippled with anxiety that she can't go to sunday school.
Which one will learn to talk and then suddenly stop.
Which one will get strep throat and have their world turned upside down.
And it breaks my heart.
Pray for our children. Pray for these families. Pray for understanding and empathy and compassion for the mother who's child is throwing an uncontrollable fit on the 3rd aisle of the grocery store. Maybe he's not just spoiled. Maybe his brain is on fire.
Judge less. Love more. And tell your pediatrician about this little known disease called PANDAS. Tell the butcher. The school counselor. The piano teacher. The sunday school teacher.
You might just be saving a child's life.