Today’s guest blogger Kerith Stull is mom to a daughter with special needs. So she knows special needs parents have plenty to do. Still, she thinks there certain things special needs parents need to do, no matter how busy they are. Here’s an even dozen items that need to be on every special needs parent’s to do list.
12 Things Special Needs Parents Need to Do
My 18-year-old daughter, Brielle, has moderate cerebral palsy. If you’re a special needs mom like me, I’ve probably been where you are. There are things I wish I knew to do along the way.
Cry, scream, get violent (safely), and get over it. If you need help to get through a dark period, talk to family, friends, or seek professional help.
#2: Collect Information
Do your research. Talk to doctors, family, friends, and strangers. Some will offer insight and advice, often unsolicited. They may not always be right, but listen anyway. Write everything down so it helps you think, remember, and separate out your feelings.
#3: Gather your Tribe
Ask family and friends to come by your side. Some may scare away, but most will be eager to be there for you. Cultivate friendships for your child as well. Your child needs friends and you need to know your child has friends.
#4: Love On Your Family
They need your love and you need to love them. Make your husband and your marriage a priority. Be a team and give attention generously. Pay attention to your other children, let them have their own identity, and love on them independently from any other chaos.
#5: Take Care of You
Attend to your body, mind, and spirit. Ditch the bad habits. Rest when you can. Always keep some energy in reserves. Keep your mind active and alert. Believe in something bigger than you are.
#6: Attend to Your Finances and Legal Matters
Spend money wisely. You may be providing for your child’s needs for their entire lifetime. Your child’s ability to eventually receive government funding may be compromised if your child has any money in their name. Invest in life and disability insurance. Write a will and create a special needs trust.
#7: Be an Advocate
Gather information. Formulate a solution or plan. Be assertive. Make it happen. This might mean you become a bit of a watchdog, rattle a few cages, or make some compromises. Pick your battles carefully.
#8: Find Activities for Your Child
They provide social opportunities, learning experiences, and therapeutic benefits. They will also give you an opportunity to interact with other special needs parents and recognize your own joys and blessings. Find a hobby just for yourself as well.
#9: Do Not Baby Your Child
The more you baby your child and encourage interests below their age level, the less your child will grow. You might want to keep doing things for your child, to ease their burdens. Don’t. Give your child chores and keep adding responsibilities so they learn life skills.
#10: Plan Ahead
Have a written plan for your child’s daily care, plans for the future, and anything someone else might need to know to take your place. At least three months before your child’s 18th birthday, start the guardianship process and apply for disability income. Plan for your child’s future 25 and 50 years from now, including living arrangements, routine, job, volunteer work, and activities. Start getting those things lined up now.
#11: Keep a Positive Spirit
Things are going to get better. There will also be seasons when things are much worse. Both are transient. Don’t sweat the small stuff. There will be messy, frustrating days. Appreciate the small successes. You’re gonna screw things up. Learn from your mistakes, pick yourself up, and try again.
#12: Find Your Purpose
Figure it out, even if it seems like something small. Part of your purpose is surely about paying it forward. Find someone who is where you were and be the sort of friend you wish you had at that point in your parenting journey.
Want more detailed advice specific to your child’s age?
- Have a special needs baby? Read Dear Newbie.
- Have a special needs preschooler? Read Dear Novice.
- Have a special needs elementary school child? Read Dear Advanced Beginner.
- Have a special needs teenager? Read Dear Experienced One.
What Do You Think Special Needs Parents Need to Do?
What do you think of Kerith’s list? Which items on the list are you going to work on? What would you add to the list? Leave a comment and then check out the links below to connect with Kerith at her website and beyond!
Kerith Stull earned a Master’s Degree in communication and worked in marketing before becoming a stay-at-home mother when her children were little. She has been married to her high school sweetheart for the last 24 years and is a recent semi-empty-nester since her 20-year-old daughter moved out to go to college. Kerith blogs about special needs parenting issues at brielleandme.net with her uniquely positive perspective. You can also find her on Facebook, Twitter, Pinterest, and Google+. She recently published a book, Brielle and Me: Our Journey with Cytomegalovirus and Cerebral Palsy, about her experiences with their 18-year-old special needs daughter and their family’s journey of hope, determination, love, and faith.
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