Seeking Answers for Autism
“You should stay home.”
Who knew four little words would hurt so bad.
Even more than “your son has autism”.
I was at a park that day with my friends and their children. My older son was two and my younger son was a few months old. These outings were frequent, we were all stay-at-home moms, our husbands traveled, and our get-togethers saved our sanity.
Both my boys were melting down. The youngest was hungry, and frustrated that mom was taking so long. But the oldest? I hadn’t a clue. These were the ‘pre-autism’ days. He was always my happy, go lucky boy, but that day he was inconsolable.
He wasn’t tired, he wasn’t hungry or thirsty, he didn’t need his diaper changed. He wasn’t able to tell me what was wrong from his still small vocabulary. While his little brother was calmed by a bottle, there was nothing working to make him happy.
Was this the terrible twos I always heard about? I was the first in my mom group to have a second baby. I had nothing to compare it to. I quickly packed us up that day and we headed home in the car, all of us in tears.
Who knew four little words would hurt so bad.
Even more than “your son has autism”.
I was at a park that day with my friends and their children. My older son was two and my younger son was a few months old. These outings were frequent, we were all stay-at-home moms, our husbands traveled, and our get-togethers saved our sanity.
Both my boys were melting down. The youngest was hungry, and frustrated that mom was taking so long. But the oldest? I hadn’t a clue. These were the ‘pre-autism’ days. He was always my happy, go lucky boy, but that day he was inconsolable.
He wasn’t tired, he wasn’t hungry or thirsty, he didn’t need his diaper changed. He wasn’t able to tell me what was wrong from his still small vocabulary. While his little brother was calmed by a bottle, there was nothing working to make him happy.
Was this the terrible twos I always heard about? I was the first in my mom group to have a second baby. I had nothing to compare it to. I quickly packed us up that day and we headed home in the car, all of us in tears.
This article originally featured in Issue 4 of Sweet To The Soul FAITH Magazine
I don’t remember what finally calmed my older son that day, maybe the car ride, maybe getting back home, maybe his favorite Blues Clues video. But I do remember the phone calls that came that afternoon from my friends.
“I’m going to drop off a book on discipline. Maybe he needed a good spanking.”
“Maybe getting out with two small children is a little too much for you and perhaps you should stay home for a while instead.”
You should stay home. Four little words that hurt so big.
In their defense, my friends didn’t understand what was going on any more than I did.
It would be several more months as my son’s plateau in development became more obvious before we heard the other four little words, “your son has autism”.
“I’m going to drop off a book on discipline. Maybe he needed a good spanking.”
“Maybe getting out with two small children is a little too much for you and perhaps you should stay home for a while instead.”
You should stay home. Four little words that hurt so big.
In their defense, my friends didn’t understand what was going on any more than I did.
It would be several more months as my son’s plateau in development became more obvious before we heard the other four little words, “your son has autism”.
See below for additional resources.
We didn’t know what autism was and didn’t know anyone with a child with autism. Googling autism back then made his future look grim, leading to more calls from friends, now with questions.
“Will he be able to go to school?”
“Will he ever live on his own?”
“Will he ever get married?”
Not very helpful.
Maybe staying home wasn’t such a bad idea after all. Hiding out and trying to understand what was going on and how best to help my son seemed like the right answer.
But God knew the journey we were embarking on, and the help I would need, long before I did.
When our neighbor heard the news, his family immediately began praying for us. He gave us the number of a friend of his who was a mom just a few years ahead of us on the autism journey.
When I reached out, she had just come home from the hospital with a newborn. She had other children at home, one with autism, and yet she found time to spend on the phone with me. She shared everything she knew about early intervention for autism, preschool resources to help us, and her prayers for us.
God brought her to us right when we needed her and he would continue to do that time and time again.
“Will he be able to go to school?”
“Will he ever live on his own?”
“Will he ever get married?”
Not very helpful.
Maybe staying home wasn’t such a bad idea after all. Hiding out and trying to understand what was going on and how best to help my son seemed like the right answer.
But God knew the journey we were embarking on, and the help I would need, long before I did.
When our neighbor heard the news, his family immediately began praying for us. He gave us the number of a friend of his who was a mom just a few years ahead of us on the autism journey.
When I reached out, she had just come home from the hospital with a newborn. She had other children at home, one with autism, and yet she found time to spend on the phone with me. She shared everything she knew about early intervention for autism, preschool resources to help us, and her prayers for us.
God brought her to us right when we needed her and he would continue to do that time and time again.
God knew our hearts needed to hear four little words again from family and friends. How can I pray? How can I help?
I remember my mother-in-law passing along a prayer request from a friend at church. It was a mom whose son also had autism and I immediately reached out. We discovered our sons with autism were the same age. Their siblings were the same age. She has been a lifesaver for me in more ways than one, and 20 years later, we are still dear friends.
God would continue to open the doors to family and friends that were helpful in providing support and prayers for us. He would also help us set boundaries and give grace to others who weren’t.
God knew our hearts needed to hear four little words again from family and friends.
How can I pray?
How can I help?
Every family’s needs are different, and they change throughout the years. But one thing that remains the same is needing your prayers and support.
And when you don’t know what to pray or how to help, ask God those same four little words and He will answer.
Blessings Soul Friends,
Kim
Autism Resources
National Autism Organizations
https://autismsociety.org
https://nationalautismassociation.org
https://www.autismspeaks.org
These organizations provide lots of information on the national, state, and local levels, including information on resources below. Be sure to look for local parent support groups, and resources for legal and financial planning in your state including special needs trusts, and guardianship at age 18 if needed.
Early Childhood Services (under age 3)
https://www.cdc.gov/ncbddd/actearly/parents/state-text.html
If your child is experiencing development delays before their third birthday, contact your state's Early Childhood Services. They can provide speech, occupational, physical therapies, and behavior support and help with the transition to your school district at age 3.
School District (age three and up)
https://www2.ed.gov/about/contacts/state/index.html
School districts provide educational services for ages 3-22. Connect with your Special Education Director for help with evaluations, diagnosis, early childhood intervention and preschool programs, behavior intervention, and parent training. All services are dependent upon your Individualized Education Plan (IEP). Be sure to ask about parent support groups and other resources on this list.
State Workforce Agencies
https://www.dol.gov/agencies/eta/wotc/contact/state-workforce-agencies
If your child is 18 or over, check to see what services your state offers to assist with employment if needed.
Your school will also help with this in their Transition plan.
Medicaid State Waivers
https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html
These programs are not dependent on family income, but your child's diagnosis and may differ state to state. They provide therapies, in-home and out-of-home respite, attendant services, day programs, and residential services for adults. Get on all the waitlists for services even if your child does not need them yet as the waitlists can be long (ie. In TX our waitlist is 15+ years). You never know what the future will bring.
Special Needs Ministries
https://www.joniandfriends.org
Seek support through a Special Needs Ministry at a local church. If your church doesn't have one, reach out to Joni and Friends and they can provide information on starting one or recommendations to churches in the area that have one. They may also offer a parent support group.
**Disclaimer: this is not meant to be medical or legal advice. Please consult appropriate resources above. This is not an all-inclusive list as every state is different, and the needs of every family are unique.
https://autismsociety.org
https://nationalautismassociation.org
https://www.autismspeaks.org
These organizations provide lots of information on the national, state, and local levels, including information on resources below. Be sure to look for local parent support groups, and resources for legal and financial planning in your state including special needs trusts, and guardianship at age 18 if needed.
Early Childhood Services (under age 3)
https://www.cdc.gov/ncbddd/actearly/parents/state-text.html
If your child is experiencing development delays before their third birthday, contact your state's Early Childhood Services. They can provide speech, occupational, physical therapies, and behavior support and help with the transition to your school district at age 3.
School District (age three and up)
https://www2.ed.gov/about/contacts/state/index.html
School districts provide educational services for ages 3-22. Connect with your Special Education Director for help with evaluations, diagnosis, early childhood intervention and preschool programs, behavior intervention, and parent training. All services are dependent upon your Individualized Education Plan (IEP). Be sure to ask about parent support groups and other resources on this list.
State Workforce Agencies
https://www.dol.gov/agencies/eta/wotc/contact/state-workforce-agencies
If your child is 18 or over, check to see what services your state offers to assist with employment if needed.
Your school will also help with this in their Transition plan.
Medicaid State Waivers
https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html
These programs are not dependent on family income, but your child's diagnosis and may differ state to state. They provide therapies, in-home and out-of-home respite, attendant services, day programs, and residential services for adults. Get on all the waitlists for services even if your child does not need them yet as the waitlists can be long (ie. In TX our waitlist is 15+ years). You never know what the future will bring.
Special Needs Ministries
https://www.joniandfriends.org
Seek support through a Special Needs Ministry at a local church. If your church doesn't have one, reach out to Joni and Friends and they can provide information on starting one or recommendations to churches in the area that have one. They may also offer a parent support group.
**Disclaimer: this is not meant to be medical or legal advice. Please consult appropriate resources above. This is not an all-inclusive list as every state is different, and the needs of every family are unique.
Kim Stewart is a wife and mom of two adult sons. Her oldest son, Heath, was diagnosed with autism at age 3. She's also a book marketing strategist for Christian nonfiction authors and host of the Book Marketing Mania podcast. When she's not working behind the scenes, you'll find her in Dallas enjoying time with her family, and indulging in coffee, caramel and Friends reruns. Connect with Kim at kimstewartmarketing.com
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