I chose to be a parent, but having a child with a disability was not part of my plan. It felt like someone had pushed me into the deep end of a pool and I didn’t know how to swim, or like I was skydiving and found out I had a faulty parachute. When I first became a special needs parent I believed our lives would be sad, limited, and somehow, less-than. Thank goodness I was wrong.
This is what I wish I had known about being a parent of a child with a disability:
1. The sadness over the diagnosis is normal, and it does not last forever.
Edited to add: If you continue to experience grief, get help. It is possible you are experiencing unresolved grief and a professional can help. There is no shame in that!
2. You soon discover that your child’s diagnosis is only a part of who they are, it is not what defines them or gives them value.
3. You thought you knew unconditional love simply by being a parent, but then this little person shows up in your life and challenges your heart, truly showing you what unconditional love means. No strings attached, no expectations to meet, it’s just simple, pure, unadulterated love.
4. Some people will say hurtful things. Most don’t want to be hurtful, they are ignorant. Try to forgive them, remember you were once ignorant too.
5. Angry advocacy does not accomplish much.
6. Don’t be afraid to acknowledge hard days. Every parent has them, and some days are worse than others. Add special needs to the mix and the highs are really high and the lows are really low.
7. Depending on your child’s condition, pooping on the potty might be the-best-accomplishment-ever!
8. You will laugh every time someone says, “God gives special children to special parents,” because you know you are not special at all. You do not have more patience, strength, or holiness than the neighbor next door.
9. When people say to you, “I could never do it,” you will cringe inside a little because you know that loving your child is not hard at all, it’s what parents do. And you will also know they could do it too if their child had a disability…unless they are terrible parents, like, to any child.
10. You will feel a pride so deep for even the smallest accomplishments your child achieves. You will feel like a balloon with so much joy inside you could burst at any point. And sometimes you just might, and your neighbors will wonder what got into you that you are jumping, cheering, clapping, and making a fool of yourself in the front yard.
11. There will be a clear distinction between your old-self and your new-self after having a child with a disability. The new-self has a much better understanding about what matters in life, about what makes our hearts beat, about the value of all life.
12. Your life will be rich, full, and covered in love. You will be doing somersaults in the deep end of the pool, you will love the wind on your face and learn how to soar.
Special Needs Parents, Are You Surviving?
I created a guide with 13 practical ways to help you find peace in the midst of chaos, opt in to make sure you get a copy of this freebie!
Thank you…it couldn’t have landed in my inbox on a more perfect day. I think #13 is that this is a process…each and every day is a process… Thank you for the encouragement you provide…I look forward to learning more from your BTDT experiences. Blessings…
Dear Ellen!
I’m reading you blog now for a few weeks, it is fabulous! Thanks a lot for writing it!
You find such great words to tell so many thoughts, which meet with mine – such wunderful words, such words of hope and consolation. We are also a special-needs-family, our oldest daughter Isabella lives with Rett-Syndrome, she is now 11 years old, has also two lovely sisters (7 and 9 y.) – we live in Austria, Europe.
Love what you write and how you write it!
This Post “12 THINGS I WISH I’D KNOWN ABOUT BEING A SPECIAL NEEDS PARENT” – i’ve translated into german and wanted to ask, if it will be okay to repost it on isabellas blog – of course there is a link to your fabulous blog to your original words.
I hope, to read a lot of such wounderful postings in future also – grettings of an golden autumn in Austria
Romana
Romana, thank you so much for your message, I am so glad that my words can resonate with your heart and offer hope. Thank you also for asking about he translation. Yes, you can do that, could you send me a link to it? I would love to see it 🙂
Ellen, this post is perfect. Thank you so much for writing it. Will share!
Dear Ellen!
Thanks a lot for your OK – i invite you to have a look:
http://www.isabella-online.blogspot.co.at/2014/10/rett-syndrome-awareness-2014-15-okt-12.html
A lot of german-speaking parents really love your text – it really fits in with our thoughts!
Romana, thanks for sharing the link! And thanks for the feedback!
Ellen,
I have read some on your blogs. One thing I always notice about any site regarding down syndrome is today and the young child. The childhood lasts a short time. People tend to talk a lot about how their child is doing at that stage of life and never talk about the future. I was also guilty of that. Had someone been there and said this too shall pass, but you need to plan for the future because that is much more complicated, expensive, and heartbreaking, especially if you have no other children. You can never count on family no matter what you may think at this time because they “are so cute”. The cute will pass and fear sets in as to what will happen when you are no longer there to do the things that only you know. Start now making a journal for future caretaker, a book with pictures and notes for your adult child to read. Start attending everything you can find if you can find it on special needs planning and make out a trust. My child is 26 and the fear is almost to panic now. Group homes are full and hard to find unless you are a billionare. I have tried so hard to get parents to talk with me about starting our own group home and no one wants to talk. Thank you for the range of topics, not just the childhood.
Great post, Ellen! Such good advice! I’m passing this along to quite a few moms I know who will be blessed!
Thanks for sharing Ann!
Thank you. My child is 5 years old and I have found I am only now beginning to acknowledge that it is okay to show my feelings. To let them be seen by others whether they be joyful or sadness. If you bottle them up inside you will go crazy. # 6 was for me.
I have to disagree with one sentence in #9. Parenting a special needs child IS hard work, just as it is with our typical children– but it is sooo rewarding! We learn so much about what really matters.
And, yes, we celebrate the strangest things. Is it indelicate to say I celebrated when my son could finally reach to pick his own nose at 8 years old?!
I could have written this and have had dialogue with others about each of those points somewhere along my journey. Well said.