Skylar’s Story-Part 1 (Her Regression in Pictures & a Few Words)

I get asked by a lot of people if we saw a regression in Skylar or if she had always shown delays in many areas.  My answer isn’t cut & dry.  Skylar had some motor delays and I believe those were due to the birth trauma she had.  She sat up right on schedule.  She didn’t crawl in a traditional sense.  The best way to describe her crawling was “scoot swimming”.  She pushed off with her back legs and pulled with her arms.  She looked like she was doing the breast stroke on the floor.  She didn’t walk until she was 15 months.  Even though her motor skills were somewhat delayed, her language developed early on and she said many clear words and 2-3 word combos.  She said: thank you, please, more milk, my ball, mommy, daddy, Becca, baby, grandma, etc.  The best way to describe the changes we saw in Skylar is to show you in pictures.

Skylar was an extremely happy baby!  She had great eye contact.

She also loved to snuggle and be held.

Doesn’t Chris look like a teenager in the picture below?

She was so bubbly and laughed all the time!  We used to joke that her personality was as crazy as her hair!

She would play in this playhouse for hours.  I loved listening to her talk and pretend to pour our dog Rex his favorite tea.

Then things started to change.  She was extremely unhappy and stopped using words.  She stopped smiling.

She lost all eye contact.

It is hard to explain the shift that took place in her.  The best way I can describe it is that she lost that “gleam” in her eyes!

While all the other kids were upstairs playing together with their new toys from Christmas, Skylar played by herself.  She played with this train for hours on end in my parent’s basement.  She would start & stop the train over & over & over.

No amount of hollering her name or waving things could get her to look at a camera.

She did not like to play with other children.  But she would play with my niece, Becca.

She seemed to be trapped in her own little world.  I so longed to know what she was thinking.  I just wished she could answer me:  “Are you sad?  Are you lonely?  Are you happy?  Are you confused?  Are you hurt?  What’s wrong?  Please talk to me!”

As years went by we saw improvement.  More hugs.

More smiles.

And improved eye contact.

It is tough for me to look at the pictures of Skylar’s regression.  However, as I look at these pictures, I see the tremendous progress she has made over the past 10 years & I am SO encouraged.  She has come such a long way!  She’s doing things that her diagnosing doctor said she would never do.  Here she is competing in her school spelling bee just a few weeks ago.

And singing the solo in her Christmas concert this year.

There are so many people who we know are part of the tremendous progress she has made, including this woman, whom I wrote about here.

And these people , who have never given up on her & have been with us EVERY step of the way.  We could not have gotten through this without our family!

And last, but certainly not least…YOU!  We are so thankful for all the support, love, encouragement and prayers that we have gotten from so many of you.

It’s been a long and tough 10 years, but I can’t wait to see all the things that this sweet girl is going to accomplish in the next 10!

Thanks for walking this road with us!

And for those of you who are just starting to walk this journey or are even a few years into it, my advice for you is this:  “Never, ever give up!  Don’t let anyone tell you what your child can or can’t do!  Also, pull out your camera and document your journey.  I am so glad that even during a lot of sad & stressful times, that I took pictures.  When I feel discouraged all I have to do is pull up these pictures and see how far we have come!

This is one big reason that I do Project Life.  I love documenting our every day and seeing her accomplishments and her progress.  You can read about what Project Life is here.

Make each day great!

JuJu

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21 thoughts on “Skylar’s Story-Part 1 (Her Regression in Pictures & a Few Words)

  1. Goodness Jules, Skyler’s story in pictures is incredible! She has always been a beautiful, vibrant little person who, along with the rest of her family, I’m so thankful to have met and to know. It is so good to see her eyes gleaming again! Love and hugs!!

  2. Thank you for sharing these pictures. It was like watching my own daughter’s regression into autism. How neat that you have it documented. It haunts me how much my daughter’s eyes changed when she regressed. I agree with you that we should never give up! I am glad to hear your daughter is doing so much better. Take care. -Molly

    • Thank you Molly! She has really come a long way. We know our road is still going to be long, but we have been tremendously blessed. The change in so many of our kids’ eyes is truly haunting! Thanks so much for sharing!

  3. Wow, that series of photographs was fascinating, but I’m sure so hard to look at as mom! My son has a rare disease, and I documented the worst of his days, even the days we didn’t know if he would see a tomorrow. It’s hard for me to look back at those too, but great to see how far he’s come. So in my own way, I can relate! Great advice on the bottom of your post.

  4. Very powerful post Julie, I don’t know much about autism and your post gave me some insight, and some tears.

    Made me want to give my own girl an extra hug. Skylar is very lucky to have you for her Mummy.

    • Thank you Sharon! That is my ultimate wish is that people will get an insight into what our life is like & that ultimately there will be more understanding & acceptance of autism.

  5. Powerful post Julie. The pictures are heartbreaking and then encouraging just as Skylar’s journey has been. You and Chris are amazing with her and Hailey.

  6. Julie, Skylar is so blessed with a mom like you.. you are amazing.. God has gifted you with Skylar as you are truly a remarkable mother……. he has given you all the tools to get through this journey. Chris too….. amazing story to follow and I see the accomplishments in the photos….. truly amazing… love to you all. You are both along with your children an inspriation and sharing this with others is truly a blessing. Many will learn from this life journey as you are definately not walking this alone……

    • Thank you Cheryl! I’m so blessed to have Chris to walk this road with & we just couldn’t love our girls any more than we do. I’m so thankful for the tremendous progress & improvements we have seen.

  7. When my youngest son was 8 and we had him tested and diagnosed on our own (outside of the school system) we were told that he had severe COPD and ADD (without the hyper part) and that we should immediately put him on meds and alert the school system. As a grant writer for special education for the State of NH’s post-secondary school system…this is one thing that I avoided because I personally did not want my son part of the state/fed government’s horribly misfunctioning specical education in public schools. Right after that we moved to North Carolina and decided not to seek the “professional” help recommended by the ADD founding agencies in Durham as recommended by the doctors in New Hampshire. Instead…we decided to make our own modifications to our lifestyle and food/health. First, after moving to NC, I quite my full time professional career as an accountant and grant writer and stay home with my boys. Second, we made sure that my son was put on a schedule and diet that helped him cope with his environment. We reduced as many distractions as possible so that he could complete his school work on a daily/nightly basis. We made sure that he ate on time, took showers to help him relax every night before bedtime and then made sure that he got into bed in time so that he would have at least 8hours of sleep every night. Then last, but not least, when he entered middle school, we put him into a private, christian school where he received the individual attention that he required without any labels being put on him. Now he is a young, married man who works full time in his dream job…he’s an aerospace engineer. He has always been about working hard and following through. When he entered college there was just under 400 enrolled in his degree program. Four years later when he graduation…only 7 walked the walk and received their degrees and my son was one of them. Needless to say we are very proud of him. We’d like to take some of the credit but the bottom line is that he did all of the work and continues to make modifications to his lifestyle even now as an adult, to make his days as enoyable and successful as he can with his add and copd tendencies. We all have our personal issues and as we become adults they are labeled as “habits” or “likes” and “dislikes” or in our parents case…for COPD…”it’s my house, do it my way”…lol I’m just happy that we decided to find a natural path in lieu of the suggested “medication”.
    Sorry I went so long on this…just so happy to share when I read about other parents who follow their “guts” when it comes to doing what they “know” is right for their children. No one knows your daughter like you do and would even notice the “light disappearing” from her eyes…other than you…this is when we have to step in and be their light!

    • Thank you! It is so difficult to see the regression. I’m so thankful that I have these photos though so I can clearly see the impovements she has made! As always, thanks for your never-ending support & encouragement!

  8. I wish I knew how to do this (well, a quick&easy way to do this, that is). Or i wish i had a blog. BC I could show u the same exact thing. I could go thru my sons pics and put 2gether a slide show displaying his regression. Happy, bubbly, outgoing, bright, precocious baby started losing his way around 17months. It all went downhill after a flu shot at his 2yr “well-baby” visit (is that an oxymoron, or what?). Needless to say, the worst of his days were btwn 2yo & 3.5yo. It’s mind boggling how many parents have the same story. Our kids r all very different, obviously but it’s just way too many parents witnessing their babies’ eyes lose that spark. I don’t believe in coincidences, either. I feel like when it comes to this, common sense keeps getting thrown out the window along with all those proverbial straws being grasped at. Common sense PEOPLE! Common freakin sense!!! It’s maddening!
    Luckily, my son’s picture slide show is also THREE phases: before, during, AND after. Like u, (&many others), I got my child back. And HE couldn’t be happier! Call him in ‘managed recovery’ if need be. Call him indistinguishable amongst peers. Whatever. I just call him by his name. And he answers!
    I listened to my intuition & followed my gut. Most importantly, i never gave up hope. Never will. Over time & with plenty hard work on all our parts, my boy has def got the sparkly gleam back in his eyes.

    • Thanks for stopping by to comment! It is really difficult to see that regression in so many of our kids. I’m so glad to hear that your son is doing so well! That’s awesome!

      Skylar is doing really well. We still have a long road ahead of us, but we won’t ever give up!

      Thanks so much!

  9. Pingback: My February Favorites « Applied Behavioral Strategies

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