Dear New Special Needs Parents – You Are Not Alone #DownSyndrome #SpecialNeeds

by Carrie with Children with 7 comments

It’s hard to believe that Molly will be two years old at the end of June!  She’s getting so big and accomplishing so much these days.

I always find myself thinking about the days, weeks and months after Molly was diagnosed with Down syndrome.  Here are my thoughts on what I would tell a parent new to the special needs world –

 Stop referring to Doctor Google!

Searching the Internet for stories, symptoms, traits and what to expect is helpful, but sometimes it makes things much worse.  In the months after Molly was born, I had to keep myself from searching too much.  While most of the information was encouraging, there was also a lot of negative stories (and people) that I just wasn’t ready to deal with yet.

You are not alone

Don’t be afraid to talk about your feelings.  It’s completely normal to be scared and unsure of what the future may bring.  It was healing for me to talk with others about Molly’s diagnosis.  I also think it was helpful for others, in that they felt comfortable enough to ask questions and share their questions too.  I’ve always had an “open door policy” to talking about Down syndrome, but have never promised I wouldn’t cry while talking about it.

Go Local

Some of the best resources I’ve found for Molly and our family have been with local organizations.  Before Molly was born, I had no idea that there were local support groups and therapists available to help with Molly’s condition.  I’ve met new friends and found so many knowledgeable folks right here in my own area.

Love your new baby

Treat your new bundle of joy, the same way you would any other child.   As we said in Molly’s birth announcement –  she sleeps, cries and dirties diapers just like any other kid!

I can certainly understand the fear and anxiety that comes along with learning of a child’s diagnosis.  It’s something I think about every single day.  It’s scary, but it doesn’t have to be scary all the time.  I promise!

What advice do you have for parents new to the special needs world?  

    Comments

  • Sarah


    Love this. Thank you for sharing. Being a mom of a son with Special Needs is hard and it is nice to be able to connect with others.

    • Carrie with Children


      Thank you, Sarah! It’s so great that we all have the blogging community to turn to for support!

  • Sharon Schoepe


    My biggest piece of advice is to remember that they are so much more than their diagnosis. Concentrate on loving and cherishing your baby. My Kayleigh is so much more than her Down Syndrome. We have always said if you look at a special needs child and all you see is their diagnosis then you are missing out on so much more. Remember love doesn’t count chromosomes.

    • Julie Meadows


      @Sharon,so true! While I don’t have a child with Down Syndrome,I do have a sister with austism and it breaks my heart to see how many people can’t look past that one word to see the entire person. They truly are the ones missing out.

    • Carrie with Children


      LOVE your advice … and your quote of “Love doesn’t count chromosomes”. Yes! So fantastic. Thanks for reading, Sharon!