Friday, April 3, 2009
Ten things a community can do to help families with autism
Published April 2, 2009 Claremore Daily Progress
Posted on-line April 03, 2009 11:03 am
— My husband and I oversaw a large helps ministry at a local Atlanta mega-church. In the height of our time there, with 300 some weekend outreaches a year, our middle son was diagnosed with Autism.
It came suddenly, after vaccines were doubled. After much prayer, dietary changes and chelation therapy our once silent child is healthy and talks now. After five years of facing the greatest challenge of our life, we want help churches and communities support and minister to families facing autism. Maybe you know someone with an autistic child but just don’t know what to say or do.
Here is a guide:
1.) Most families facing Autism feel ostracized and isolated.
Their life has usually experienced abrupt change. One of the best things you can do is love them unconditionally and treat them normally.
They face down lots of negatives every where they go - whether battling for school provisions or listening to doctors and therapists constant evals detailing how their child(dren) don’t measure up. Kind comments about even small improvements in a child can bless a Mom dealing with autism.
Encouraging people can keep a mother facing Autism from plunging into an abyss of depression. Reminding them that God has a hope and a plan.
2.) Understand one thing, very clearly, even if a child is higher functioning...
The number one fear, worry or concern with parents of children on the Spectrum is what will happen to their child when they are gone. While you sleep peacefully this thought plagues them day and night.
Making a space for children on the spectrum in your Sunday School or assigning them a buddy, so parents can attend a worship service together. It is worth more than gold.
It allows them to tap back into God’s power and plan for their lives and restores them from hopelessness.
3.) Understand that Autism is a neurological disorder not an infectious disease, demonic oppression/possession and not necessarily something out of order in the home.
One out of every 150 children are diagnosed with autism and growing. Pastors have children with Autism, famous people have children with autism and so do regular folks right in your community. It’s a global crisis.
Children with neurological disorders will do strange things, stim, groan, eat stuff that isn’t food, head bang. Know that when kids are treated for metabolic disorders, heavy metal poisoning, and given proper therapy these symptoms often disappear.
But unlike things like potty training or teething with typical kids, the symptoms often take a long time to change and heal. Parents some times give up on activities because no one understands.
The top thing you can say to a parent with a child facing Autism is “How can I help you?” One day at church a gentleman came up to me and said “Hey Karen...I just want you to know we are praying with you for Josh’s full recovery.” He will never know the balm those words were to my soul. So seek to understand and forgo judgment.
Here is a little secret about parents who have a special needs child, we often judge ourselves worse than any well meaning person can.
Knowing hope and God’s love set us straight and keeps us thriving without condemnation.
4.) Families in crisis have to manage anger.
Frustration boils over because unlike a nurse, pharmacist or therapist we don’t get to clock out everyday. Sometimes sleep is at a premium or not at all.
For us, Josh was a runner. Meaning we had to live in a miniature Fort Knox, only without the gold! Several times he almost drown, once we found him under a neighbors truck, down a busy road in a pull-up, and even going to the grocery store was a fiasco. 911 and poison control knew us on a first name basis. Our neighbors knew that look of distress and how to quickly form a search party. It was crazy, until Josh healed up past this behavior. I had one friend who from time to time would just spontaneously show up with a cake or even dinner. So ignore angst, it comes with the territory when you are in a situation you can’t control. Lend a loving listening ear and offer to pray.
Hum where do I start with this one? Imagine growing up in a family where your parent’s world revolves around a child in crisis. Imagine spending time in boring waiting rooms and hearing “We can’t get that! We’re going to the doctor this month.” Imagine going to church or school with all the regular kids and having a strange brother you love and understand but other people don’t. Siblings are the unsung heros of the autism epidemic.
Compassion is in their DNA. They keep Mom and Dad sane and are often the best most natural therapists for our autistic children. So when you meet a brother or sister of somebody on the spectrum recognize them for something outside of their family’s trial with autism. If you’re in a place to give them some respite, a night out, a movie, do it- because the world rarely revolves around these kids.
Last year after doing no sports ever, we took the plunge and signed my typical 11 year old up for baseball. His team went undefeated into the Championships and then won the Championships. Later they were recognized by the mayor. David and I think this was God’s blessing on a big brother who often lived in the shadow of his brother’s autism.
So “love on” as we say in the South, a sibling of an ASD kid today.
6.) Pray for families with Autism to have their physical needs met.
Sponsor them in financial classes, pass down clothes, offer to fix a car and know that raising a child on the Autism Spectrum topples 3-4million dollars over the life time of the child.
In the first year of treating Josh biomedically we burned through $30,000 in out of state doctors, lab testing, and dietary interventions. Most families will not tell you that the financial struggle is constant. Many of us have been in the position of choosing compounded supplements over paying the phone bill.
The autism diagnosis is the “kiss of death” for insurance coverage.
Once you have it, you begin a long hard fight to get anything beyond psych meds covered. Often times there is a misconception that “the State” pays for all our needs, which couldn’t be further from the truth. State help comes after miles of paperwork and only covers limited things like therapy. Parents are often denied services or subjected to steep government cuts in services especially during hard times.
When we were in the height of helping Josh recover, a relative started sending us a little money each month. They were not our richest relative by any means, they just said they prayed and wanted to help.
That gift was a drop in the bucket for our monthly medical needs but gave me hope enough to pray that God would take care of the rest. And He did and still does today.
7.) Lend some space at your church for “date night” respite or for monthly support group like “TACA Talk about curing Autism now.”
Parents of special needs kids have an 85% or higher rate of divorce.
They need very targeted support and outreach. Getting together with parents fighting the same battles strengthens and equips parents to go on.
Who knows? You may help a child in your community to recover because you opened your doors.
8.) Train child care workers to lovingly except children with Special Needs. Once I was working in a nursery for 3-year-olds and while I left the room, a parent was asked to remove their daughter with Spina bifida.
She had braces and was not in anyway a problem but the children’s minister was intimidated and asked for the parents to take the child.
I offered to one on one watch her as I entered the room explaining I too had a special needs child, but the damage was done. I followed the very rejected father (who was crying bitter tears) down the hallway begging him to bring his daughter back. But it was no use.
Talking to the children’s ministry leader later, I was told that Special Needs Children are an insurance liability. While I’m sure that may be the case for some medically fragile children, most special needs kids can easily be accommodated with just a little instruction from parents. I hope I never live to see a visitor carrying out a child from church in braces again. Rejected from the very place they need the most. Strive to understand, always.
9.) Disregard crazy news stories on Autism and don’t mention them to parents.
Autism is big money for TV because of all the controversy with vaccines. We routinely have to suffer through crazy studies presuming what caused our child’s Autism. Refrigerator mothers, Old Dads, Geeks, TV, Rain. The latest is “Fathers who chose less curvy mothers.” After a while you become fatigued from all the news and just want to live a normal life.
So save yourself an eye roll and don’t mention Michael Savage’s latest rant on autism to a family dealing with it.
10.) If all of the above fails ask God what the family(ies) in your church facing Autism need.
Remember He loves and heals all. The rain falls on both the just and the unjust. Let the rule of LOVE supersede all that you do. You might just be the very person(s) that family needs right now.
Last April for the first time Josh was in an Easter production. The new church we had started to attend insisted he be included. We had to work double time to rehearse but Josh got it down.
I spent the service in tears. I would have understood if he wasn’t included but someone thought enough to ask. Be that kind of someone to a family with Autism.
That’s what Jesus would do.
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April is Autism Awareness Month