Caregiving for a Child on the Austism Spectrum

MCC5

 

 

Meet: Sarah Ann
Caregiver Connection: I met Sarah Ann through the #write31days challenge in October. Her amazing story caught my attention, and she graciously agreed to guest post and share part of her journey.
Blog: Faith Along the Way
Who she cares for: Joy, her autistic daughter.
Favorite Bible Verse: “I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.”  Psalm 16:8

As the oldest of four children, I was born a caregiver. At an early age, I was feeding babies and changing diapers, and quickly blossomed into the role of the responsible mother’s helper and big sister.

Being a nurturer prompted me to get my degree in Special Education and my role as a caregiver continued as I shined God’s love into the lives of my extra special students.

My role of caregiver changed drastically in the second year of my marriage when my husband was diagnosed with cancer and I doted on him during radiation and chemotherapy.

When we decided to expand our family, God had other plans and for five long years I prayed for a child to love. Through anguish, sorrow and grief, God broke my spirit and I surrendered fully to His plan for us, as I relinquished my dream of motherhood back to Him.

In His timing and with His power, God united us as a family with our baby girl, Joy, through the beauty of adoption. Twenty months later, God surprised us with another miracle, Joy’s biological brother, Bubs.

In love with our Joy, we didn’t mind that she lagged behind in a few developmental milestones. Eventually she caught on to concepts that her peers had been doing for months.

When she wasn’t walking at 18 months old, Joy began physical therapy and soon after, the therapist recommended screening for Autism.

I was devastated, since I had had a sinking suspicion for months that she might be on the spectrum. Hand flapping, limited social skills and slowing speech development haunted the dreams of this former special educator and I just knew that she had autism.

Surprisingly, when the testing concluded, she was NOT diagnosed with autism. We went on with life, although Joy continued to lag behind the development of her peers.

Sarah Ann & JoyA year later, when it was time to complete another round of testing, the results were not the same. This time it was obvious.

Joy was on the autism spectrum.

Grief engulfed me as I struggled to process her diagnosis, yet I felt surrounded by God’s presence, knowing that He walked this road with me and allowed this to filter through His mighty hands.

Logically though, I could not comprehend how life would ever return to normal and how everything would be all right.

I was blinded by our present circumstances; the tantrums, the middle of the night wakings, the head banging, the limited vocabulary and I grieved the loss of a normal future.

Grasping at straws, I diligently researched cures for autism, finding specific therapies and diets that were found to have a high success rate in treating autism.

I needed to find hope for this condition.

Yet there is hope for her, regardless of treatments and interventions we try.

There is a hope that despite our darkest days, God is in control. He has a beautiful plan for her life and for the life of our family.

He formed her at birth, fashioned her in His image, and no matter what limitations her life here on Earth may bring, God knows and loves her heart EXACTLY as she is. (tweet this)

Lovingly, God listened to my rants, dried my tears, reassured my broken heart and faithfully provided shelter from the storm.

His mercy met me in my fears, my anxiety and in my weariness, when I was unable to shoulder the burden of the caring for her.

A year has passed since God brought me out of the darkness and through the journey of accepting autism.

Our Joy currently attends a Special Needs Preschool program through our local system and is making slow but steady progress. A gluten-free dairy-free diet has brought a lessening of the hand flapping and head banging that used to plague her days.

Overall she is happier, sleeping better and easier to manage, although we still have a long way to go.

She still has moments of meltdowns, tantrums, and sheer frustration.

I still have days where I wonder what God is doing in our lives and how I am supposed to keep up my role as caregiver to her for the unforeseen future.

I still have moments where I selfishly question, “What about me? Who takes care of the caregiver? Where is rest for my weary soul?”

It’s in those moments of exhaustion where I hear God whisper, “I take care of the caregiver. I take care of you. I supply you with peace, rest and strength. I alone will sustain you.” (tweet this)

blogbioIt’s in those moments where He showers me with His peace that I can go on to clean another mess, dry her little eyes and care for her special spirit, knowing that He who promised is faithful.

 

Find more inspirational stories here.

How has God comforted you in your caregiver journey?

Anita currently teaches English to 7th-12th graders. She describes herself as a ‘recovering cancer caregiver’ who gives thanks daily that her husband has been cancer-free for ten years.

Please note: We reserve the right to delete comments that are offensive or off-topic.

  • As I’ve struggled to adjust to life with my two 2E kiddos, I’ve faced the same question. “What about ME.” There are times when comparison (to “normal” families) steals my joy. But yes… God is there. He takes care of me. He sends friends to walk with me. He restores me and renews me. He carries me when I’m beyond exhaustion. Through it all, I’ve learned that HE is enough.
    susan recently posted…my kids make me laugh (again) #mkmmlMy Profile

  • Anita, thank you for having Sarah guest post today. What a powerful story she shares and I am in awe of her strength and tenacity. I love the photo of her sweet daughter with the perfect name, Joy. Because that is the challenge for all of us, no matter our circumstance: to find Joy.

  • These stories are such heart-tuggers, if you know what I mean. I am ever in awe of how we find comfort from God in the challenges he has given to us. Prayers for you, the Caregiver!
    paula recently posted…KEEPING FAITHMy Profile

  • What a beautiful story! I have a dear friend of mine who has 2 sons on the spectrum. The role of caregiver is never easy whether it is for a child, your aging parents, or anyone else. Great guest post! 🙂

  • Sarah Ann, thank you for sharing your story. Your daughter is beautiful. Working at a church, I have seen how hard it can be for families with children on the autism spectrum. I am a caregiver myself…for my momma. I loved what you said here: “It’s in those moments of exhaustion where I hear God whisper, “I take care of the caregiver. I take care of you. I supply you with peace, rest and strength. I alone will sustain you.” Oh how true are those words. I will say a prayer for you and your family!
    Tara recently posted…Forgive Us Our Sins As We Forgive Those…My Profile

  • Donne

    I am also a special education teacher who adopted two children, one of whom came to us with significant developmental delays (he tested at 12 months at the age of 3). He was not formally diagnosed as on the spectrum until the age of 9; he was served as PDD-NOS until then.
    Speaking as a mom who has been through his childhood (he turned 18 last summer) and seen him gaining independence and maturity, I can assure you that there is a light at the end of the tunnel. I know that every story is different, but he has overcome so many challenges that I am assured there is hope.
    Have you researched RAD (Reactive Attachment Disorder)? We have found that both the boys exhibit signs of it even though the younger one was removed at 3 months old. It is difficult to deal with issues that may crop up if you are not aware they could be an issue!

    • It’s wonderful to hear there’s a light at the end of the tunnel! I’ve been amazed to watch how she’s blossomed in a year and is overall a happier person now that we’ve implemented some strategies and therapies to meet her needs. Thank you for the support!
      Sarah Ann recently posted…To the Woman Who’s Lost Her SparkleMy Profile

    • I’ve often wondered about attachment issues with children that were adopted. My son, at two, is an attention seeker and obsessed with being funny. He can’t get enough attention, and I’ve wondered why. Thank you for the suggestion to check out that disorder. I will definitely look into that. Best wishes to you!
      Sarah Ann recently posted…To the Woman Who’s Lost Her SparkleMy Profile

  • My severely autistic son is now 25. I wrote about him during my #write31days. Only if you have traveled that road do you know how painful it can be and how God can use it to drastically change your life for His glory. My son is the bravest person I know…thank you for sharing your daughter.

  • Pingback: Celebrate National Family Caregivers Month With Us | Blessed (but Stressed)()