Delays and disabilities – how to get help for your child.

Hi everyone, I just wanted to let you know about a great March of Dimes blog series by a friend and colleague here at the national office. Barbara C is also one of our moderator's here on ShareYourStory and she has been our featured speaker at ShareUnion. Her blog series is called Delays and Disabilties - how to get help for your child. As a dad to a child with special needs, I often turn to Barb in moments of crisis and self-doubt and confusion. She has talked me down from more than one ledge. She is one of the brightest, kindest, most generous souls I have ever met. I will share her blog with you each week. I hope it inspires you, comforts you, gives you the tools you need to meet the challenges of being a parent of a special needs child. It does me.

48 Replies

  • Hi Everyone,

    I just posted today's blog post. Today's topic is Keeping track of your child's records Kids with delays, disabilities or even minor issues tend to accumulate lost of files and paperwork. It is soooooo important to keep all of it in a way that is easy to find and track. It becomes especially critical to have your child's documents handy for IFSP and IEP meetings, and for applying for any kind of government benefit. So, take a look at today's post for suggestions and ideas to help make your life simpler and less stressful. Hope it helps.

    All the best,


    Pregnancy and Newborn Health Education Center

    March of Dimes
  • Hi Everyone,

    Since James is swamped with the transition to the new Share Your Story site, I am updating you on the newest Delays and disabilities posts. Here are the latest three posts:

    What are Related Services? (They include Speech therapy, Physical Therapy, but can be much more.)

    What is Speech Therapy? (Even babies may benefit from ST - it is helpful for so many different issues!)

    What is Occupational Therapy or "OT?" (This post may be the most helpful one of all, as most people do not know the full spectrum of what OT can do and how it can help.)

    So, happy reading everyone, and remember that you can send your questions to We are here to help.

    All the best,
  • Hi everyone,

    With the new ShareYourStory about to launch in a few weeks, I am behind on providing all of Barb's awesome posts. I am going to get you all caught up this week...

    My son has an IEP (Individualized Education Program). It was and still is a scary process for us. Barb's post will help walk you through it.

    And then there is 504 plan. How is that different from the ISFP and IEP?

    I know all of these acronyms are overwhelming. Honestly, they overwhelmed me. Barb is the one who made them less confusing to me. She helped walk me through them.

    She made me a better and more informed parent.

    Tomorrow, I will share her posts on resources for your child.

  • Lauren, this family was featured again on Nightly News this past Friday!!!
  • Thanks Lauren for putting that out there. I saw this story on Nightly News awhile back. I had tears then too. So touching . . .
  • I saw that story, what an amazing family! There's a video of it floating around the web somewhere.
  • Oh wow... give this a listen. It's a StoryCorps interview with a dad and his adult son with Downs Syndrome... but grab tissue first!

    Tim and Keith Harris | StoryCorps
  • b new blog posts

    Hi everyone, I was out last week and didn't have a chance to post the latest blog entry on Delays and Disabilties - how to get help for your child

    Last week, Barbara covered
    learning the lingo of developmental delays, disabilities, early intervention and special education. I wish we had this document when my son was getting his IEP (Don't know what IEP means? Click on the link. :wink:). There were many times a service provider, a peditrician or an educator would be talking and I just nodded because I didn't want to look stupid.

    This week, Barbara covers the
    Individualized Family Service Plan or IFSP.

    From someone who has been there...these are both awesome articles that I wish had been around for me!
  • Barbara, thank you so much for putting your blog entries out there. So informative:) I just wanted to add that sometimes it can take a few months for the school district to test and to receive those results. I remember making the call to the district office in August and was put on a wait list. We then started testing in September and October, but it wasn't until the first week in November that we sat down and had the results. Parents with concerns should make those appointments as soon as they can and keep in mind school start dates as well. In addition, if parents disagree with the results and want to request outside testing (paid by the District or otherwise), also best to call right away and be put on a wait list there too. Sometimes the doctor's offices are packed and it can take months to be seen and more precious time is lost.


  • Hi all,
    Just remember that the categories of disability include "developmental delay" and "other health impairment" which are two qualifying conditions for a child to receive services. Many children can not be diagnosed accurately at a young age. For instance, children with learning disabilities are usually not diagnosed until the child is further along in elementary school. And often a child with Autism is not fully identified until later in preschool. This is why the catch-all "developmental delay" is helpful. You may not need a more indepth diagnosis to start taking advantage of helpful services. And remember, you can always end the services or refuse them if your child suddently takes off and does not need them anymore.

    The Care Map in the article mentioned above was humbling. Hats off to all the Project Managers of their sweet special kids!


    Health Education Specialist

    March of Dimes
  • b new blog posts

    Hey everyone...I am sorry. I missed a link last week. Barbara wrote a really good blog appropos of this conversation on Early Intervention for children 3 and over. For Julien, we didn't start the process until he was four. We knew all of the signs. We knew there was something different. And yet, you could not encounter two parents in more denial. We just kept thinking that we would just try and love him more, help him more and things would get better. And when they didn't, we felt lost, that we lost so much time and didn't know where to start.

    No matter when you begin the journey with your child, you will likely feel like we did...overwhelmed by terms and acronyms. You may also not know what your child is guaranteed by law. Barb's post this week on delays, disabilities and the law will help.

    Good luck parents.

  • Lauren, I am thankful you are one of the circles to parents. You have no idea how much it means to parents who necessarily always have their backs up against the have someone kind, smart and is always willing to listen.
  • Page - We missed out on some early intervention services. When the DDD Support Supervisor told me that 4.5 years old was really young to be diagnosed, I was fuming! It can be such a frustrating process. I hope that more families will keep pushing for those much needed services.

    Lauren - WOW, thank you for sharing that article. So true, so many people involved in the care/education of our special needs kiddos. It's a lot to keep track of. I've got my contacts and therapy dates written down, but oddly enough I have started to memorize the mileage from that place to this place as well as expenditure due dates. This is information that I never thought I'd know or need, but happy that I have the room up there in the noggin to keep it all straight. I'm all about languages, this is a new language that I am slowing learning and happy to embrace.
  • I saw this the other day and was quite humbled by all the folks involved in this kiddos care (the parent did a "care map" to illustrate how many people were involved with her child), knowing that I'm totally one of those little circles to peeps sometimes! Really puts things in perspective- you ladies are doing PhD parenting!!!,b=facebook
  • I'm with Lauren on the wondering why more pediatricians don't validate parent's concerns more often. What does looking into things hurt? If the parents are wrong, good. If they're right, they will be able to get to the EI services all that much faster.

    When Luke was a baby, the fact that he was delayed became obvious to me much before it did to the professionals. I was told that his delay was preemie related and he would catch up. I knew deep down it was something else. It took us until he was over a year old and could not sit up on his own before I found someone who listened. It took some doing to get EI services going for him, but once we were on, it was easy. We got PT, OT, speech and cognitive therapies started before he turned 2. He was able to start Early Childhood Special Ed when he was 2 as well and that was so important.

    Linsay, you are right. If you don't have someone to help you along, it can be sooo difficult to know what's out there and how to get it. There are several child and family advocates out there in my state and I suspect others as well. You just have to keep digging. The state and counties and even the school districts aren't always willing to share a lot of information, sometimes they aren't aware of it themselves, but I get the feeling they just don't want to pay for it.