A new blog series is here

polio-poster-for-blog6Having a baby is a wonderful journey. It is filled with unexpected joys, moments of laughter, pride and boundless love.  But what happens if something goes wrong?  Or, if you suspect that something is not right with your baby or child?  What should you do? 

The first thing to realize is that you are not alone. There are many parents out there who have been (or are) in your shoes. This new blog series will give you the knowledge you need to help you deal with the unexpected. It will take you from the beginning (when you suspect or confirm that something is not going according to plan), right up through your baby’s childhood to help you navigate the choppy waters. Hopefully, with this “GPS,” you will feel in control of your journey. 

If you are reading this blog post, you may suspect that something is not right with your baby or child. But, you may not want to take the next step because you are cautious about labeling your child, or you are simply afraid of the road that you may end up going down. Well-meaning grandparents, relatives or friends may tell you that your child is fine, marches to a different drummer, needs discipline or time. That may all be true, but you know your child best.  If you think that there is a chance that your baby is struggling or is delayed, then the best gift you can give your child is the help he needs to catch up – as soon as possible. Time matters.  In many cases, babies and young children qualify for “early intervention services” based simply on a “developmental delay” and a more detailed diagnosis is not necessary to receive helpful services.  So, “labeling” your child may not be an issue at all. Try not to worry about what other people may think; just concentrate on getting your child help.

Why this blog?  Why March of Dimes?

The March of Dimes’ history is lengthy.  Since 1938 we have been working tirelessly to improve the health of babies and children.  President Franklin Delano Roosevelt (FDR) founded the March of Dimes to defeat polio, a crippling disease that afflicted him. Success came in the form of a vaccine which protects children from polio to this day.  FDR was an outstanding advocate for the disabled, and knew all too well how a disability affects not only an individual, but also his/her family and society. 

After polio, the March of Dimes went on to fund some of the greatest medical advances of the 20th century.  In fact, our work has been recognized with 13 Nobel Prizes (that could be its own blog series!).  But I digress…The point is that inherent in the March of Dimes is the goal to help babies and children live healthier lives. So, helping parents find resources for their children when things go wrong fits right in with our mission.

Why me?

As I write this blog, my personal story may unfold from time to time. I am a parent of two children – a boy and a girl – one with special needs. How I wish I had had a blueprint to follow when my daughter was a toddler experiencing “developmental delays!”  I was lost and frankly clueless. I took parenting classes, went to support groups and of course took my daughter to countless doctors. There was no Internet to “Google” a diagnosis or find support groups. Nevertheless, I muddled through, and amassed an enormous amount of information along the way. Now, I want to share my knowledge with you so that you can be an informed parent and educated advocate. As a Health Educator with a Master’s of Science degree and a parent of a special needs child, I hope to bring a perspective that provides a combination of “I get it – I’ve been there” with a factual blueprint for you to follow.            
         
My kids are both in their 20’s now, and I have to say I would not trade in this journey for the world. My special needs baby girl is a recent college graduate (looking for her first job), and despite the fact that she may always experience more bumps in her road than the “typical kid,” she has done remarkably well. She also sends a message to all parents with kids with “issues” to focus on their children’s gifts and strengths, and in time, you will see that they will blossom to be the best they can be. Never say never!

So take a good look at this poster of a polio victim holding a photo of FDR. The hard-to-see caption reads “We polios can fill almost any job.”  To me it speaks volumes. If an individual afflicted with polio could be our nation’s president for four terms, it is time to look beyond the disability and see the ability in everyone.

So, stay tuned for the upcoming series Delays and disabilities – how to get help for your child. It will appear every Wednesday for the next few months. We will love to hear your comments and input!

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14 Responses to “A new blog series is here”

  1. Adecker Says:

    My 2 year old son just got diagnosed with Autism today and I feel so lost. I blame myself for not actually seeing it till the doctor confirmed it. I thought he was a normal child that was hyper and behind on the development a little but we were seeing a therapist to help. I always thought Autism was a small thing but now that my son is being affected by it it seems like a bad thing. I’m honestly scared what my child will be labeled as or looked down on. I want to do everything I can to help him, I just don’t know where to start or what to do. I hope this blog can help me. :)

  2. lori kidd Says:

    I am grandmother of a premature baby, now 8 years old. We are now finding disabilites within him. I look forward to your articles. Thank you so much!

  3. Susan Buckley Says:

    I am the mother of five who understands all too well the issues children can bring with them. All my children have special needs including, anxiety, OCD, CFS, ADD and a prosthetic. I feel that it is important to acknowledge that each child will need some extra help at some point in their lives, e.g. glasses, medical care, educational help, sports training, braces. I feel by looking at it this way we take away the stigma of disabled and just view them as individuals. It is always great to find support from those who have walked this way before us. Thanks.

  4. Barbara Says:

    Adecker- I am so sorry that you received this news today – you must feel like a truck just hit you. First of all, do not blame yourself! It is not your fault. Also, an Autism diagnosis is often not able to be made until a child is around 2 years of age – it is different for every child. Just focus on taking one step at a time as you begin getting your son the help he needs to start making progress. There is help out there – this blog will tell you how to access it. In the meantime, I will send you a separate email to help you get started. But for now, take a deep breath and know that you are not alone, and you will get through this. :)
    Barb

  5. Barbara Says:

    Lori,
    This blog series is designed exactly for children like your grandbaby. Delays or disabilities can appear at any time, and parents need to have the knowledge of how to advocate for their child. I hope you find it helpful. And, if at any time you have specific questions, you can send them to us at AskUs@marchofdimes.com. We will do our best to help!
    Barb

  6. Barbara Says:

    Hi Susan,
    I could not agree with you more! If it were up to me, I would simply get rid of the word “disabled” and call it “differently abled.” Everyone has strengths and weaknesses. It is what makes each one of us unique and what makes this world so interesting. I look forward to hearing your comments as this blog gets underway. Parents helping other parents is so important!
    Barb

  7. Erica Says:

    Autism is not a death sentence its is a new way of thinking. My son was diagnosed a 2 1/2 with PDDNOS than at 5 autistic. Its OK. They will get the help they need. May state parks give them parks passes. Out world is their school. You are never alone. Stay active and they will be OK. Use their strengths to help with their weekness’ . happy is all I want for my son. Everything else will fall into place.

  8. Maureen Says:

    My son was born at 31 weeks and weighed 2# 2oz. (966 grams). Because of his small size (Intrauterine Growth Restriction) he has quite a few significant delays. He is in full-time special education and receives physical, occupational, and speech therapy.
    When he was born, I don’t think I realized how much IUGR would affect his life. I think there needs to be more education on that and long-term consequences.

  9. Barbara Says:

    Hi Maureen,
    There are many known reasons why kids suffer delays. There are also many unknown reasons. Thank you for sharing your story about your son and IUGR. Whatever the reason for the delay, we are glad that your son is getting the help he needs to catch up. We welcome your comments as this blog series continues.
    Barb

  10. Barbara Says:

    Hi Erica,
    Thank you for your comment. I’m sure your positive attitude and value of each person’s uniqueness will be uplifting to many parents out there! I couldn’t agree with you more!
    Barb

  11. Tasha Says:

    Hello Everyone!
    My name is Tasha. This blog is great. I had twins at 25 weeks. They were 1lb. 12 oz. and 1lb. 10 oz. I lost one of my twins in the NICU, the other twin stayed for 5 months. He was released just after Thanksgiving. He has cerberal palsey and developmental delays. He is 3 years old and just learned to walk. He currently attends a special needs preschool. He has made a lot of progress that doctors told me he wouldn’t be able to make. The key is early intervention. We started therapy services right out of the NICU and he is still in therapy now. I look forward to more blog entries and more responses from other mothers. This is both informative and supportive to hear everyone else’s stories.

  12. Barbara Says:

    Hi Tasha,
    Thank you for sharing. I am so sorry you lost one of your babies. We are heartened to learn that your other twin is doing well and defying odds due in large part to early intervention. I hope he continues to do well. We look forward to hearing stories from you and other parents like yourself as this blog series unfolds.
    All the best,
    Barbara

  13. Jackie G Says:

    Barbara -
    Thank you for writing this. I think all of us parents go through a time when we question whether our child has developmental issues or not. I know I still look at my 9-year-old former 25 weeker and try to figure out if her quirks are just quirks or something more serious. It’s hard to know the difference.

    I look forward to reading more as I think that learning how to fight for our children, is something all parents need to know!

    Thanks for sharing your wisdom,
    Jackie

  14. Barbara Says:

    Hi Jackie,

    Great hearing from you! Your perspective is so important! Hopefully this blog series, along with the comments from all our readers, will help to clarify when there is or isn’t a problem. My general philosophy is to err on the side of early investigation. If there is a problem, then you have time to intervene. If you wait too long, then you are playing catch-up. Fortunately, there are professionals out there who can help tease out the differences.

    I look forward to hearing from parents such as yourself – we all learn from each other.

    Thanks again.
    Barb

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