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In June 2010, I became a special needs mom. With no family history and no warning signs, my newborn daughter Molly was diagnosed with Down syndrome.
It was a confusing and scary time. I was overwhelmed with love for my second daughter, but also terrified of what the future might be like for her. I had a 1-in-840 chance of having a child born with Down syndrome, so needless to say, Molly’s diagnosis came as a complete shock.
Not long after Molly came home from the hospital, I decided I could either live in fear of the unknown or provide a positive, loving environment for her. I chose to celebrate milestones instead of fear them.
Talk, Talk and Then Talk More
The only thing that seemed to help me come to terms with Molly’s diagnosis was to talk about it. I wanted to share my feelings with those around me. Most of all, I wanted and needed them to listen. Find someone that you trust and just let it all out. Talk about your feelings, fears and happiness.
Cry
When talking about Down syndrome with others, I assure them that I wanted to share Molly’s story, but that it may involve a few tears along the way. Don’t be afraid to cry. Some days are easier than others. There are days when the only thing that makes me feel better is a good crying session.
Be Honest
Down syndrome and the special needs world were so new to me in the beginning months. And while I love for others to ask me questions about Molly and her needs, I’ve never been ashamed or afraid to admit when I don’t know something. In fact, I make it my own little mission to learn as much as possible!
Write It Down
Writing and putting my thoughts down on paper, just as I’ve done here, have helped me immensely throughout this special needs journey. Whether it’s on a public blog or just a diary next to your bed – write down how you are feeling. It will be neat to look back on in a few years and see how much you’ve grown as a mom and how much your child has grown too!
I’ve found the special needs community to be a great support system – locally and within my online community. It’s important to surround yourself with people that are supportive, caring and believe in doing everything possible to help your child.
Jolene Philo says
Hi Carrie,
Your tips for staying positive are wonderful and spot on. Thanks for sharing them. I mentioned them on my blog today and linked to your post. Here’s the URL: 4 tips to help parents stay positive after their child is given a special needs diagnosis: http://www.differentdream.com/2012/10/special-needs-diagnosis-4-tips-to-stay-positive/#
Kathy says
Our oldest, Brian, is 23 and out on his “own” now. It was rarely easy raising Brian, but now that he’s out there living life on his own I find myself thinking about how he might be the luckiest one of us. He leads a simple life and doesn’t need much.
Thank you for sharing Carrie. It was heartwarming to read about precious little Molly.
All the best,
Kathy
SoCoMom says
Our son was diagnosed in 2007 with Autistic Spectrum Disorder shortly before he turned 3. It was a shock, but I had been feeling for about a year that something was not right. I actually had to beg for a referral to have him assessed. It was hard to go against the reassurances of my family and pediatrician that he was fine and I was “just” worrying. I knew they wanted to comfort me, but I needed to *know.*
We learned as we went along, and like you, I’ve learned to celebrate progress and milestones, regardless how they may seem to others. They are special achievements for our kiddo and we are proud to be moving forward. I celebrate with parents of other special needs kids in our community, online with a blog and website MyAutismTeam.com, and family/friends (pictures and letters). I try to stay positive by being happy with what I have and occasionally take time out for myself.
I have found some great support with those who work with our son: teachers, therapists, local Parks & Rec staff, and our Regional Center liaisons. I have also learned to let go of things that stress me out or make me crazy. I take time instead to enjoy the little and true things in life.
Best of luck to you, your daughter looks well-loved and adorable. I like the Disney photo too!
Brandy says
When my son was born I knew he was not as “normal” as my other child, he seemed always angry, never really full and constantly wanted to nurse. It was draining emotionally and physically. As the years went on, I knew by age 2 that my poor son was showing major signs of a mood disorder, in my family bipolar runs heavily through the gene pool and having grew up with a sister who wasn’t diagnosed bipolar til mid 20’s I knew he had it. I fought for many years getting tests, parenting lessons, anything to try to see what was “wrong”. No one believed me that he was bipolar, it was so hard to watch my son be so moody at such a young age and after my 3rd child was born, being happy as his sister (my 1st born child) I knew that my middle child needed to find proper diagnosis. Finally just six months ago he was diagnosed with bipolar after showing some more symptoms of child bipolar such as hallucinations, it was so scary and frustrating for me as a parent to watch & know I could help in no way except to continue fighting the counselor and get him to ped psychiatrist. Finally he is now on proper meds for bioplar and is shining through but I must admit it was difficult to stay positive, I just tried to remember I am all he has to fight for him and to help him succeed in life. That kept me moving and being positive!
MommyPage says
Your positive attitude is refreshing. It must be incredibly difficult finding out that your child has a special need. Your suggestions were very helpful. Thank you!
Sandy Lynch says
Thank you, we all needed this especially me, when the days are long and the negativity can get the best of me, I need a special reminder of their needs…
Nichol says
I’m not a parent of a special need child however I am the sister of a sister with down syndrome. Growing up with her was a joy. Of course there are times you cry, and get frustrated, but all you can do is celebrate just like any other child. I have watched my sister cry numerous times which was hard on our entire family. To this day we still celebrate. She is still the happiest girl in the entire world and will be 30 on Aug 1!
Rachel says
Fantastic post, Carrie. your daughter is beautiful – thank you for sharing these tips – they’re helpful for all of us 🙂
Violetta says
A very inspiring post with great advice 🙂 + love your honesty!
Mandy says
What a beautiful little girl with an amazing mom! I know this post will help so many people.
Melissa says
I love your great advice! Thank you for sharing your story – Molly is so lucky to have such a wonderful family!
Susan says
Carrie, that you for sharing your advice and experience. It’s amazing how talking and supporting each other changes everything.
Janice says
Thank you so much Carrie for sharing your heart with us here. I LOVE that social media and blogging has brought so many opportunities to share parenting experiences and find strength and understanding from one another. HUGS!!!
Cheri says
Tk u for sharing! Am in 20th yr working w special needs daughter. PACER has been wonderful as child goes thru SCHL system. Need medical MH drs to provide diagnosis to SCHL. Need state laws as well. My daughter only last week told me she wished I’d not discuss w ppl re her challenges cause other ppl n kids overhear n call her names. Also teachers n kids get tough to work w in middle n high SCHL levels. I wanted a male health teacher fired but told he tenured, 20 yrs n coach. His behavior towards my then 10th grader thru her into depression n anxiety, panic attacks! Changed schls n only encountered worse male spec Ed teacher. We got PACER involved n he was moved to other area of SCHL BUT damage done. As 20, just grad frm high SCHL! I feel she’s not learned very much! Trying Cosmotology SCHL now. She has ADD, cognitive brain damage via childbirth, COD, high risk impulsivity, poor short term memory, n mentors n paras n tutors have worked w her repetively. Some improvement recently. Feel badly for her as she knows she’s a beautiful creative young woman with a different brain. God bless u w your Molly! She’s so beautiful 🙂
Karen - Desert Chica Ramblings says
Great advice! I love your positive attitude and I think your advice is truly applicable to all moms and their uncertainty. Thanks for sharing your beautiful little girl!
Jennifer, Snapshot says
My daughter had a congenital defect that appeared a few weeks after she was born. It was very visible — making her eye look swollen or bruised, and to protect her vision we had to patch half her waking hours. She also got glasses when she was 6 weeks old.
I totally identify with your need to talk about it. It really helped me, and I think that people thought it was odd or something, but that’s what I needed to do.
In the end, it wasn’t that big of a deal. By the time she was 4, there were no visible signs of the defect (and even a year or so before that, it was minimal), and a couple of years later her vision was almost normal — but that first year in particular was a time when I went through all of these things you talked about.
Thanks for sharing!
Colleen says
Amazing Carrie and such a sweet girl. I know we all go through doubts as a parent, some worse and in worse conditions then others. Mine are small and usually require some time alone.
Hugs to you and your little girl.
Hanan says
Carrie, you are so awesome!!
Penelope says
What a little jewel you have!
Michelle says
I love your positive attitude. I think handling difficult news by sharing and talking it out really makes you better able to process it. I love how honest you are with yourself. I could learn a thing or two from you mama!
Jenny F says
This is so heartfelt and honest! Thank you for sharing Molly with the world!
Emily says
What a great post, and I think it applies to so much in life. Those are really good tips for any type of news that is unexpected or hard to digest. Molly is thriving because you are such a great mom and took this time to adjust to your situation.
Martha says
I love your advice Carrie. It seems that you learn so much about Down syndrome and Molly’s needs. Like you I think is very important to surround yourself with a great suppor system.
Michelle Adams says
Agreed!!! 🙂
Your daughter is beautiful!
Ashley says
Great advice, Carrie! I definitely agree with talking out things when you’re feeling like you’re in a place of doubt helps immensely.
Stacey says
This is great advice!