New parents may be nervous or scared when they find out they are expecting a special needs baby but planning can help you be confident. Our little one (now a teen) was born with Down syndrome, but despite my fears, she has been my “meant to be” baby and brought me joy, wisdom and more love than I could imagine! Basic Invite asked me to write a sponsored post to give you tips on how to welcome a child with a disability. For a pregnant mother, preconceived outcomes may make you feel powerless about the future but doesn’t have to be that way. I understand the challenges of accepting a different future than I had envisioned and want to share how I got through it.
With the right planning, resources, and education, the future is nothing to fear. After Amelia’s diagnosis of Down syndrome, I became depressed. The strain of that plus numerous other life changes was overwhelming and her diagnosis put me over the top. I was holding her when we learned of her diagnosis. I wept. In my arms, my tiny, beautiful, contented baby broke down and cried hard for the first time.
That’s right: I was the reason she had her first real cry. I vowed there and then never to let happen again. I was determined not to show her my pain, and so I hid my tears and depression from her for months.
How I Found Joy In The Journey
But the reason I overcame my sadness was thanks to Amelia. She learned to smile early, clap early, and laugh early. While she lagged behind on other milestones, anything attached to joy was right up her alley! As for me, it was impossible to remain sad when every morning, this little person expressed happiness the minute I showed up. She would actually applaud when I entered her room. How could I be blue anymore?
A few years later, Zoe was very different. She cried day and night. Having sensory issues and no ability to communicate is a challenge for babies. After some time, though, she learned to communicate a bit and her nature started to shine through. The first time I heard her laughter my heart filled with joy. I made it my mission to keep that smile on her face and eventually discovered that under that hurting exterior was a child with a heart full of joy.
6 Ways to Prepare for Your Special Needs Baby
Looking back now, I can see that I could have saved myself a lot of pain if I had made a better plan to prepare for my kids’ disabilities. Here is a list of things to do when you discover that your beautiful new baby has special needs:
1. Learn The Facts About Your Baby’s Special Need
Whether your child has sensory dysfunction, Down syndrome, or any other special need, it’s critical that you learn about this issue. Your OB or pediatrician may have some resources but I encourage you to go beyond that. Find a doctor that specializes in this issue, find organizations that focus on this issue, find people with this condition who are successful adults. Follow The Mighty blog, which has individual email lists for different disabilities, and follows Special Books By Special Kids on Facebook. When you think you’ve learned everything, go deeper still. For example, Amelia has a rare form of Down syndrome called Mosaicism, so I read a lot about how that happens. I also recently learned that most people with Down syndrome have a variation in their MTHFR genes, which affects their ability to detox. The science is always changing, so keep learning!
2. Get Support
Find organizations that support your child’s needs. Even more importantly, find OTHER PARENTS LIKE YOU. Those that have been there before can tell you what to expect, what to avoid, what to look forward to when raising a special needs baby. My life changed in so many ways for the better when I found the community of parents that taught me my autistic child didn’t have to suffer headbanging and self-injury and sleepless nights. It helps to have your own cheering squad that gets it, like a group of parents that understands that when a learning disabled child lies, that is a BIG milestone to celebrate. (Of course, it needs to be corrected but the complexities of deception take a lot of skill!) Finally, find helpful funding by researching grants, respites, waivers, Social Security, even medical grants if your child has a health issue.
3. Be Thankful For Your Special Needs Baby
I always knew Amelia was a “meant to be” baby. I even remember the moment I conceived her. No kidding. Having that knowledge in my heart meant that even when I heard her diagnosis, I still knew she had a purpose. The same is true for her sister. My kids have changed my life for the better. I am even thankful for the hardships and all the bullets we’ve dodged too, and tell them every night how grateful I am to be their mom!
4. Don’t Be Negative
The first piece of advice I got from my OB when she found out Amelia had Down syndrome was not to read any old books on the topic, they were all outdated. Twenty-five years ago, parents of a baby with Down syndrome were told to prepare for institutionalization. Not so today! Kids like ours can work, marry, go to college. NEVER understand your child. Instead, find their special skill and help them to nurture it. Almost all her teachers and aides have seen and independent future for her. Even keeping this in line with reality, it’s a hope you must embrace to stay positive, strong and encouraged for the future of your special needs baby!
5. Research Hopeful Solutions
As you go deeper in learning, you’ll find that there are problems you can solve that even your doctor doesn’t realize. I was taught that Down syndrome was an inflexible, immobile disorder and that nothing could improve Amelia’s brain functioning. Since then, I’ve learned about neuroplasticity and epigenetics, which change the paradigm on “fixed” brains. I also believe that children with disabilities, autism and other special needs benefit from a junk-free, organic diet, non-toxic living and cutting-edge therapies. Trust your mama’s instinct to help you navigate new research, holistic doctors, and the latest treatments.
6. Celebrate Your Special Needs Baby
However, I don’t want you to get frustrated either. While it’s wonderful to make a plan to maximize your child’s potential, it’s more important to love her right where she is TODAY. Work to discover her true nature. My youngest was sad and frustrated for many of her early years but after therapies and diet changes, we uncovered the beauty of her true nature and it’s amazing! Remember that your child is precious in her own right, exactly the way she is.
Practical Tools To Help You On Your Journey
Some things that will really help you prepare for your child:
- A Large Notebook or Binder (And LOTS of Pens)
I started my first one when we found out that Amelia had a hole in her heart. We had to watch out for congenital heart failure (not to worry, it didn’t happen) and keep detailed notes on her feedings. I didn’t have to keep notes that detailed, but it made me feel better. Keep notebooks for various issues (health, therapies) and goals so you can foster their dreams! A binder with loose leaf works really well – just remember to date everything.
You’ll need it for the doctor visits, true, but as time goes on, you’ll need it for IEPs, specialists/MAPS doctor, respite care, etc. Dated journals are good too – I even have a 10-year journal. You never know when a doctor will ask for this information.
- Document your resources.
Have a document or spreadsheet with all the resources you find, including things like websites, conferences (there is a conference for almost every disability a special needs baby can have), blood tests, gene mapping, alternative therapy ideas, diet resources, etc. I cannot tell you how many times I have tried to find Amelia’s MTHFR information, some of which I lost. Keep as much as you can digitally and back it all up.
- A really good filing system.
My kid is 14 and I’m still working on this! Just buy an ugly drawer filing cabinet and keep in it a closet.
- Inspiration at hand.
Put something uplifting on your nightstand for the Hard Days. Whether it’s Bible verses, a book of favorite poems or inspirational quotes, a gratitude journal, or even just a picture frame with an uplifting quote, it’s good to have a visual reminder of what is good about life for those long, sleepless nights after you bring your special needs baby home. We all have them, and we can all make it through them too with a little help.
- Make time for yourself.
This won’t happen as a new mom but it’s critical once you get into a rhythm with your child. Find a little space each day, and then a little more as time goes on. For now, take time to breath deep while you’re with your baby. Use calming essential oils to soothe yourself and try to get enough of your own nutrition every day while you’re feeding your little one.
Celebrating Your New Baby
Sure, having a special needs baby is a harder road and doctors will mostly warn you of the risks ahead. I want to tell a little secret that the naysayers of this world might not say:
All babies are a blessing!
That’s what I truly believe. Recently, I went to an autism conference and one speaker, Dr. Nancy O’Hara, said, “Your child is a gift no matter how many layers you have to unwrap to get to her.” Your beautiful special needs baby is waiting to be born, and she deserves a beautiful welcome celebration! Here’s some help with the party.
1. Design The Venue
Pick 2 simple colors to decorate to match your nursery, then keep it simple. When my kids were babies, your choices were pink, blue or yellow. Now, you can do anything, from grey to green to pale rose. My niece had “fox in teepee” themed nursery and matching mini homemade teepees were our centerpieces. Plain paper table covers and dishes are fine as long as you match the theme.
2. Keep The Food Simple (But Pretty!)
Remember to coordinate the cakes and other desserts with the colors of the shower theme, like in the photo above. Fondant draped cakes, marshmallows or pretzels dipped in chocolate and colored sprinkles, or colored frosted donuts make a nice touch to round out the look. Keep the wall decorations minimal to make clean up easier. Always be mindful of guests that have allergies or food sensitivities, or Celiac disease but keep the food simple. Sandwiches, salads and one gluten-free option, with bowls of chips and dip, are easy choices that fit any season.
3. Create Beautiful Custom Baby Shower Invitations and Party Invites
Invitations that match your theme might be a challenge but Basic Invite can help! It’s one of the few websites that allows customers an almost unlimited choice of colors. They have instant previews online, allowing you to create the perfect invitation to welcome your baby. Once you select a design you can change the color of each element on the card to over 180 different color options so you can make sure the card is exactly how you want it down to the littlest detail. 180! They also have over 40 envelope colors available as well – all peel and seal to save you time and trouble. I bet you can probably match your invitations easier than your cake!
Basic Invite is one of the few vendors that allows you to order a printed sample of the actual invitation, so you can see exactly how it will print and what the paper quality is like. Finally, they have a free address collection service to request your addresses in 3 simple steps. Share a link, collect addresses, and get free envelope printing! They have lovely designs for girl or boy shower invitations, birth announcements and baby shower thank you cards to keep you covered for the whole event! Check out more work from Basic Invite on Facebook, Instagram and Pinterest.
I wish you lots of love, peace and contentment on your with your new special needs baby. Celebrate this gift you are about to unwrap.