Autism at Our House

autismatourhouseeditedIt’s 4:30 a.m. and I was in a dead sleep when I hear pounding, shouting and an occasional scream.  What’s that noise?  Has someone broken into our home?  Once I reorient myself and catch my breath, I realize that’s just my daughter, Joy, gearing up for her nightly play/screaming session.  That’s right, it’s just Autism at our house.

Joy is playing nicely with toys, content and quiet, when all of a sudden she breaks into a tantrum, which I’m convinced must rival the weeping and gnashing of teeth found in the book of Revelation. This tantrum could last mere minutes or ruin an entire day if she can’t get back to a peaceful place. That’s Autism at our house.

She is coloring a masterpiece in her Elmo coloring book, and when your back is turned, will eat half a crayon in the blink of an eye.  That’s Autism in our house.

My girl loves music and knows the tune to almost any childhood song, which she can hum perfectly, but doesn’t know 99% of the words.  That’s Autism in our house.

At a play date, she will play near a child (on a good day), but struggles to interact beyond a basic greeting. The concept of friendship, talking and sharing toys, has eluded her.  That’s Autism at our house.

When trying to get her attention but she is fixated on an object, you are lucky if she acknowledges your presence.  That’s Autism in our house.

joy's smile

But we have found the beauty and humor in our Autism. That’s right, our Autism. In case you didn’t know, each child with this diagnosis falls somewhere on the Autism spectrum. The children on the spectrum have a wide range of abilities and usually Autism for each child is very different.  That’s why the saying, “If you’ve seen one child with Autism, you’ve seen one child with Autism” is so popular in this community.

As a family we have adjusted to a new rhythm of life after her diagnosis, despite the fact that there were no set of instructions or a manual telling us how to navigate this uncharted territory.

What’s the first thing I did after the diagnosis? I hit my knees. Praying for wisdom became my number one priority.  Researching Autism therapies and pouring over blogs and medical documents for how to parent a child an exceptional child became my second.

The day after her diagnosis, Joy was asked to leave her preschool since they could not accommodate her needs. She was only at school a total of six days.  I guess I can’t blame them given her erratic behavior while she was there.  (For a reminder of what Joy was like in the general classroom, visit Our Journey to an Autism Diagnosis).

While waiting for enrollment in Special Needs Preschool through our local school district, Joy started private speech therapy and we began our journey with the GFCF diet. (Gluten-Free, Casein Free Diet). This new diet cut out gluten and casein (milk protein) and encouraged the consumption of organic meat and produce. Also recommended is limiting or cutting out sugar from the child’s diet. It is supposed to heal the lining of the gut, and promote absorption of essential nutrients. Many families that switch to the “Autism Diet” see a dramatic increase in verbal communication and a decrease in self-stimulating behaviors, such as hand-flapping.

With the combination of speech therapy and the GFCF diet, we saw a drastic increase in interaction, speech and a lessening of “stimming”, hand flapping, within a month.  We were ecstatic!  If this progress continued, it would be a huge breakthrough for her!

At the same time I began a loose form of homeschooling with her and we worked often on basic preschool skills.  After a few months, she was recognizing colors, knew half of her alphabet, was singing the full ABC song, was counting to 5 on a pretty regular basis and overall showing incredible signs of improvement.

Even her tantrums were becoming less severe and she was finally sleeping consistently well for the first time in a long time. The progress came to a screeching halt when the time changed and we lost an hour of sleep.  For whatever reason, Joy is very sensitive to the time change (both ways, springing forward and falling back) and it throws her sleep off for months.  With less sleep, there was less interest in learning, increased tantrums and less speech.

sensory fun

But the pendulum of Joy’s inconsistency eventually swung back in our favor, and once she was sleeping well again, most of the original skills she lost came back.

It was then that I realized our Autism resembled a roller-coaster ride  She peaks at the top of the roller coaster with tremendous progress and then rapidly falls to the valley of the ride as her progress screeches to a halt. We know that it will rise again, but the question is, how long will the roller coaster effect continue.  How long before we know what her potential will be and what she will be capable of?

What does Autism look like at our house now?
  • Joy will turn 4 in a few days (I seriously can.not.believe. it! My baby girl is almost 4!!!)
  • She started Special Needs Preschool in January and after a rough start, finished being able to sit in circle time with prompts
  • At school she is starting to show some interest in other kids but will mostly play next to her peers instead of with them
  • She had a large regression in both academics and speech while in school
  • She is back to saying only one to two words instead of the 3-4 words she was saying this fall.
  • The quality of her speech has also declined and now she is difficult to understand
  • She is relearning the letters she once knew and is back to square one with many of the academics we had worked on together
  • Her eye contact and interaction with us has improved tremendously
  • She is following directions better now than ever before
  • Her tantrums have slightly improved, although a world class melt down is always around the corner. I feel as though we have learned her melt down triggers and are becoming more familiar with helping her pull through with a quicker recovery time
  • The hand flapping is less, although still there. She will shake and spin something for fun, while flapping her hands. I am praying that won’t be a forever habit.
  • She is thriving on the GFCF diet; gaining substantial weight for the first time ever.  My former non-meat eater now loves steak and burgers.  She’s even eating chicken if it is mixed with the right ingredients.
  • As long as she eats a diet large in protein consumption, her sleeping habits have improved and she is getting quality sleep
  • She is silly and loves to laugh! She has a great sense of humor for a child with Autism
  • She has become a snuggler and for the first time, will gesture for me to pick her up.  She will also crawl in my lap more now than ever before!  I am soaking up the cuddle time with her!

 

What does the future hold for Joy?

Honestly, I am not sure.  🙂 I say that with peace and confidence knowing that God already has His perfect plan in place and will reveal it to me when I need to know. I may not know what her potential will be, but I serve the God who created her in His perfect image and fully trust Him for guidance.

What does Joy’s education look like for next year?

God is working in amazing ways right now (even as I type this!) and I believe that He is calling me to take a leap of faith with her education.  With the huge regression of last school year, my mother’s heart is troubled yet again. I believe that she is capable of so much more than what she showed at school but needs help unlocking her potential. I believe that potential will not be reached even in the smallest special education classroom.

I believe that with the help of an intense therapy program called ABA, we may have a glimpse of what she is capable of doing.   While I don’t know what her true potential may be or how far God made her ability levels to stretch, I feel with every fiber of my being that NOW is the time to take action and thoroughly explore this avenue.

What stands in our way for diving into ABA?

Honestly, money.  ABA costs can range from $25,000-$75,000 per year and private schools with ABA are $36,000 per year.  WOW!!! I can tell you right now, those two options are NOT in our budget!  🙂 But, God is shedding some light on how we can access affordable ABA and are praying through these options right now.

How can you help?

My true friends in faith, I need prayer; am DESPERATE for prayers about this situation.  Prayer warriors please unite and be on your knees for answers and guidance for this situation.

  • Please pray that God will clearly confirm or deny the direction of ABA therapy for Joy for the fall
  • Please pray for financial guidance if we are to head down this path
  • Please pray for the growth of our baby girl
  • Please pray that she will recover the lost skills that she has forgotten

God is faithful to answer, in His own way, the cries of His children and I KNOW He will provide the wisdom we need to make a decision according to His perfect plan for Joy’s life.

I know that while He may close the door on this therapy, I once again submit to His will for our lives.  I am antsy, on edge and honestly, more than a little anxious about making this decision,  but I know that with God’s direction, He will lead us to where she needs to be next school year.

That’s a glimpse into our life living with a precious girl who rocks the Autism spectrum and thrives despite her disability.  While not every family who has a child on the spectrum looks like ours, I find that we are all united my a common bond; loving our children and wanting them to be the best they possibly can be,

Thank you, in advance, for bringing our humble family before the throne of Jesus.  May God bless each of you!

joy with flag

Do you know a child with Autism or a form of Autism? I would love to hear your story and any recommendations you can pass along.  I am always searching for new tips and ways to improve the quality of her life.

This post was shared at She Lives Free.  Check out this adorable blog!

 

 

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About Sarah Ann

Welcome to Faith Along the Way! I am a redeemed child of God and perfectly imperfect in every area of my life. Wife to Hubs, we’ve battled the storms of Cancer, infertility, adoption & Autism together the past 10 years and praise God for his continued guidance. I hope you’ll join us on this journey through life as we trust God with faith along the way.

13 Comments

  • comment-avatar
    Sarah June 10, 2014 (12:09 pm)

    Praying for your sweet family. God is good!

    • comment-avatar
      Sarah Ann June 10, 2014 (10:11 pm)

      Thank you, Sarah! I appreciate your prayers SO much!

    • comment-avatar
      Tina June 10, 2014 (10:17 pm)

      Praying God will answer your prayers and make His will known! Please let me know if there is ANYTHING else I can do! Let’s get together this summer!!!

      • comment-avatar
        Sarah Ann June 11, 2014 (2:07 pm)

        Thank, Tina! I appreciate your prayers and friendship so much! I hope to see you soon!

  • comment-avatar
    Teresa June 11, 2014 (2:47 pm)

    Sarah,
    ABA is a great program as I’m sure you know. When I worked as a Music therapist I used an ABA format for many of my sessions and clients. While Andrew has not needed, ABA I have learned with our autism we see each year growth in different areas. Sometimes social other time academics. Tim and I will continue to pray for y’all and the decisions u have ahead. I’d love e to help support y’all in any way we can, even would be willing to throw a fundraiser event in y’all’s honor. Call me or email me and let’s catch up soon.

    • comment-avatar
      Sarah Ann June 11, 2014 (3:47 pm)

      Teresa,
      Great insight about growth in different areas. I am prepared for that and even some regression, too. Thank you for your prayers and support! I would love to catch up and hear more of your story on how your son is doing in school! I’ll keep you posted on the fundraiser, too! Your thoughtfulness is so appreciated!

  • comment-avatar
    Life Breath Present June 25, 2014 (11:30 am)

    Though I’m not sure if this would be available in your area. I once was an in-home specialist (well it was a team really) and I’d work with a family who had a child with developmental disorder(s) (often autism) and we’d do some ABA. I know that the families who received this service used their insurance (not sure the specifics of how their private v public insurance weighed). Again, not sure if something similar is available in your area, but that’s an avenue to maybe explore.

    Also, will be thinking of your family as you make this decision. 🙂

    • comment-avatar
      Sarah Ann June 25, 2014 (1:43 pm)

      Thank you so much for the suggestion! We have explored that avenue and since our insurance will not pay since it is out of network (btw- there is no in network services in our area!), the in home therapy was too expensive. I hate that cost has to stand in the way of quality therapy! I really appreciate your suggestion, though. Thanks for stopping by!

  • comment-avatar
    Kathryn August 11, 2014 (8:12 pm)

    I am so glad to have found your blog – thanks for stopping by mine today – must have been a God moment. My 4 yr old was diagnosed high functioning autism this summer and reading your posts are so encouraging. We’re just starting our journey and learning what “our” autism looks like. We’re on our 4th day care in as many years, so it’s actually been a relief to get the diagnosis and know he’s not just a bad kid or we’re just bad parents, but his brain just doesn’t work like the rest of us. I look forward to following your site – and your journey.
    Kathryn recently posted…Finding Joy in New BeginningsMy Profile

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