Episode 221: February 24, 2013
by Cheryl Butler
Before you go on, I recommend reviewing Part 1, Part 2, Part 3, and Part 4 of this series.
Today, we will wrap up our series and I will close with 4 additional tips on moving forward and living your best possible life with your amazing child.
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Tip #5: Create a “Parents’ Wish List”
Whether you have a special needs child or not, I think every parent should have a “wish list” that they can share with others to ease the burden of parenting every now and again. Your list can include anything that might make your life easier and more enjoyable, and it can even include other members of your family. Some items might include:
Babysitting. A few nights or days off throughout the year with no strings attached.
Carpooling. Perhaps friends, co-workers, or close family members could offer to take up one leg of the basketball practice all season or offer to take your special needs child to one of his therapy appointments so you can have a break.
Meal Preparation. We often see friends pitch in and make meals for new mothers, how about for a “tired” or “overwhelmed” mother instead? And you can do the same for a friend in need when it’s her turn for a little parenting TLC
Play dates. This can be a win/win situation for both parties involved. Sometimes you can score an easy couple of hours off if a good friend will offer to take your child(ren) to her house for a play date to free you up for some quiet time. She benefits as well because her kids can be entertained by yours. Then you can return the favor when she’s feeling overwhelmed.
Tip #6: Make Time for Your Marriage and Your Other Children
Naturally, your special needs child will be the focus of much of your attention, but don’t let your relationship with your spouse and other children suffer because of it. Be mindful of keeping a strong connection even if it’s just taking a few moments to text your partner and let him know how grateful you are that he is such an important part of your life. Put love notes in your other kid’s lunchboxes or under their pillows letting them know how much you love them and what a big help they are to their sibling in need.
Tip #7: Find a New Family Hobby
Families that spend time together, grow strong together. Don’t let your child’s disability stand in the way of checking out some new hobbies that you can all participate in. If your child’s disability is physical, then maybe skiing or hiking is out, but how about starting a family collection together that everyone can participate in, like sports memorabilia, stamps, or Disney items? Older kids might be interested in learning more about your family tree.
If your child’s disability isn’t physical, the whole family can participate in walkathons or other group activities to raise money for worthy causes. Brainstorm ideas with your spouse and kids, and then pick the ones that are the best fit for your family. Don’t forget artistic and cooking hobbies as well. Because our family lives close to the beach, we make a point of beach combing all year long, despite the weather outside. My daughter’s and I love to collect sea glass, with which we use to make jewelry and decorative items like colorful picture frames and beachy wreaths for our home. The boys in our family love a good adventure. They’ve found everything from old radios to baseball bats washed up on the shore. Once my son even found a wallet with $50 in it! It keeps us active and the ocean is a place we all love spending time together.
Tip #8: Stop and Smell the Tulips
When 3 of my 8 children first received their developmental delay diagnoses, a good friend of the family shared the following poem with me. I cried when I read it, but I printed it and hung it up in my kitchen so I would always be reminded that all children are a blessing, regardless of their disabilities:
Welcome to Holland
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
And for those of you just starting on this scary journey into developmental delays, therapy, special education, and other terrible things you never planned for, I want to assure you that this isn’t necessarily going to be the rest of your life. My first developmentally delayed son, now 18, is graduating from high school this year and heading off to college in the fall, with a promising future in college baseball. My daughter, now 17, is a junior and in the top 25 of her class. She never stops talking and is planning on going to college to become a dental hygienist. My third child with speech delays turned 14 this week, and is not only talkative, but also an excellent student, a social magnet, and although he still has an IEP, he may not have one for much longer if he continues to progress as he has.
Are you raising a child with special needs? Please share your thoughts in the comment section or post your ideas on the Mighty Mommy Facebook page. You can also connect with me on Twitter @MightyMommy or e-mail me at email@example.com. Don’t forget to check out my family-friendly boards at Pinterest.com/MightyMommyQDT.
Check back next week for more parenting tips. Meanwhile, remember, you are your child’s biggest advocate and you are not alone. Enjoy and love your precious child for the individual that he/she is—and watch what happens. Until next time…happy parenting!