Global Developmental Delays – How They Affect Our Lives

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red-haired childFrom the very beginning we were told that my little one had global developmental delays which is not a diagnosis but a condition or set of challenges. Do you have a diagnosis for what is happening with your child? Has it set the stage for your progress or are you swimming in a sea of doubts. There is so much to do whether you have a diagnosis or not. And please be aware that sometimes the diagnosis can be wrong.

 

Have  you watched this above video?   Did the information surprise you?  Taking these 7 minutes to watch this embedded YouTube of this presentation by the brain scientist, Dr. Aditi Shankardass, will likely amaze and encourage you.   Why?  Because it is apparent that some kids and their families struggle along in life with a diagnosis that does not create conditions for their child’s improvement. Well, that simply is not acceptable!  So what’s encouraging about that?  Its encouraging because there is more brain science that is helping families and that is well… just plain cool!

My Granddaughter’s Early Global Development Delays

Getting feedback that we were dealing with global developmental delays meant that ‘early intervention’ services were available to us.  My baby girl was months and months behind other children her age.  Not only was she a two month early premmie weighing only 2 pounds 5 ounces at birth but the well-baby checks were indicating her brain was not growing as it should have been.

That we had pretty severe developmental delays was apparent because of all the things she wasn’t doing that she should have been doing. Some of her missed milestones included:

• Not sitting up by herself at 17 months
• Was busily rocking back and forth
• Did not have speech other than baby babble
• Would often ‘zone out’
• Was not eating foods appropriate for her age, her tongue seemed to be a perpetual “O” shape
• Did not use her fingers well, did not hold her bottle at all
• Was often seen holding her hands up in front of her face as though she was studying them
• Slept like an Energizer bunny fallen on its side, an “active sleeper” is what it was called
• Never learned to crawl, but instead after several months of physical therapy did scoot on her little bottom
• Was in a constant state of movement, wiggliest little bundle of baby I’ve ever known
• Very little cognitive recognition in any verbal exchanges that occurred
• Would struggle and push you away, hugs and kisses were not welcome

And this was where we found ourselves after her mother passed away. The one thing that seemed to really soothe her was for me to sing and so I did…sing…sing, and sing.

Within two weeks of her mother’s death we were able to get services started through the Easter Seal Society.  They were the local agency managing the Early Intervention interface recommended by the Pediatric Developmental Physician my daughter and I had seen the day before I lost her.

Get Help – Therapy Helps the Brain

The very first in-home provision was a physical therapist. This young woman was such a blessing to us during this deeply emotional time.  Her kind and generous contributions to the baby and I created so many wonderful changes.  We went from not being able to sit up by herself to sitting up, (even though it was as though she was sitting in a bowl), then scooting on her bottom (even though we worked hard to get her to crawl), and then to walk at 28 months.  Talk about elated!  There were so many who were surprised and grateful because it just wasn’t clear what she was going to accomplish.  Apparently, her therapy was helping the wiring in her brain and that’s why you want to get therapy started as soon as you can

Doctors and Seeking a Diagnosis

During this time so much was happening. She was seeing a neurologist and had an EEG done to determine if there was seizure activity. The neurologist’s diagnosis was “significant microcephaly”, a condition where the brain had not and was not growing as it should have been. We were told that she would never catch up. During this time I also pushed to get speech therapy started for her as I was very concerned about her cognitive ability. Even today it apparently is very hard for her because getting the importance of ‘stranger danger’ still hasn’t been anchored. It is a concept that just doesn’t lock in. And when in a store or parking lot, staying right with me was and is the rule but I always have to have a hand on her because she is at ‘risk for flight’, she just takes off, and usually she is running.  It was scary and oh so very dangerous.

Knowing A Little – I Kept on Learning and Knowing More

In the beginning I had very little knowledge of anything related to special needs and what services were available to us. What I have learned is that it is critically important to gain an understanding of what is happening with your child and to advocate for the things you feel will be helpful. Sometimes it appeared there were budgetary issues that caused a slow response to a request for a service, such as when I wanted to get speech therapy started. Now she is still seeing three therapists a week; physical, speech and occupational. I believe that scheduling her therapy and keeping these services in place has been necessary and most certainly has created the successes we have established over the last three years.

There’s More To Come

Even still…while we know she has microcephaly, it does not define her sensory processing issues, her perseverations, the repetitive behaviors, the penchant for lining up toys or taking them in and out of boxes in sequence over and over and over again. It does not help us define why she can’t get stranger danger, or why she repeats a question back to me instead of answering it. It doesn’t explain why her feet seem to be slapping the floor as she walks or why she is so tentative about walking down stairs.  And in noisy settings she has horrible problems staying on task so learning and doing things in school is a very big challenge.

New Learning Curves and New Technologies

I will be keeping in mind the awesome information from the above video. What Dr. Shankardass said is that they have statistically been able to confirm that almost 50% of the children diagnosed with an autism spectrum disorder or ADHD/ADD have been incorrectly diagnosed. That is alarming.  Lets not think of this as alarming, though.   I’d rather see it as an aspect of ‘covering our bases’.   So we have looked at this together now, something I’ve learned, that I believe could have impact for your child or mine.  Just knowing gives us the power of knowledge so we are effective when we advocate.  Just keep this in mind as you continue your search for what is behind how your child is acting and interacting with their world.  You may want to pursue having this ground-breaking brain technology as part of discovering what’s going on.

Here is a book, The Out of Sync Child        that I believe offers great insight into the issues of the sensory processing disorder. It was the first book I read that was filled with so many “ah ha” moments that I truly lost count of them.

I also recommend reading something from Temple Grandin, a professor at Colorado State University and wonderful advocate for the autism world.  I’ll talk more about her in another post soon. If you have never heard her speak, look for that post as I will share one of her insightful presentations.

This book is an important read because we all want our children to be able to function in their adult world as fully expressed and contributing members using all of their talents and skills in a way that brings them satisfaction and joy.  Temple Grandin has said that collecting social security is not a job description. Of course we want more for our loved ones than being disabled for the rest of their lives. This book offers insight and hope.

Please if you have any questions or concerns, leave me a comment or send me an email. Together we can hopefully find an answer or set out on a path that will help.  Email: linda@specialneedsadvocatepower.com

Thanks for reading today.

6 Responses to “Global Developmental Delays – How They Affect Our Lives

  • Hi Linda.

    I just wanted to say that you have such a helpful website that will help so many people. And you write in such a sensitive way-it’s great to see a site written by someone with personal experience who understands special needs.

    Thanks for creating “Special Needs Advocate Power.” We need more websites like this-just my personal opinion. 🙂

    Jen

    • admin

      Hi Jen. This is so kind of you to share that you feel this is a helpful website. Looks like my reaching out in the written word is coming across as I had hoped; “sensitive” was your word. Indeed that is my goal to be aware of others needs and provide insight and support to them. Your opinion is most valued!

      Linda

  • Hi Linda,

    Thank you for sharing this valuable information. Keep up the good work 🙂

    Fabio

    • admin

      Hello Fabio! I am glad to hear from you and that you have found this information valuable. It is my hope that those who want and need support for their loved ones will find some of what they need here in my site. I appreciate your feedback.

  • whoah this blog is great i love reading your posts. Stay up the
    good work! You recognize, a lot of individuals are searching round for this information, you can help them greatly.

    • Linda

      Thank you Marsha for your feedback. If I help a few it will be worth the time and effort to learn how to reach out in the forum of a blog. I hope you will pass my site on to those you know who could benefit.

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