12 Things Special Needs Parents Need to Do

by Kerith StullMay 14, 2014Advocacy, Special Needs Parenting7 comments

Special needs parents are busy people, but guest blogger Kerith Stull says there are 12 things they need to do for the good of their families.

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 are certain things special needs parents need to do, no matter how busy they are. Here are a 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.

#1: Grieve

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.

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!

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By Kerith Stull

Kerith Stull earned a Masters 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 Brielle and Me: Our Journey with CMV and CP with her uniquely positive perspective. You can also find her on Facebook, Twitter, and Pinterest. 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.

7 Comments

Jolene on May 15, 2014 at 6:58 pm

Hi Andrew,

Thanks for the compliment. Yes, feel free to cite the post and link to it when you do your blog post. We love to share!

Jolene
Andrew Pulrang on May 15, 2014 at 6:17 pm

This is an excellent list! I am sure it will help lots of special needs parents and match up well with their experiences. It has also helped me think through my own thoughts about what I would like to say to special needs parents, as a person who grew up with disabilities myself. I’d probably say a lot of the same things you say here, but there are some other ideas I have been wrestling with. At some point I will probably post something on my blog. I hope you won’t mind if I cite and link your “12 Things …” post. In the meantime, I would appreciate any thoughts from special needs parents on what you would like to know from adults who grew up with disabilities. You can email me at: apulrang@icloud.com.
Kerith Stull on May 15, 2014 at 2:24 pm

Kim-

I’m glad this post helped you! But, great questions, too! I hope I can help(not knowing the age or complexities of your child or the family dynamics).

As for getting everyone “on board” with not babying, it might take a family meeting to communicate what you want and why you want a change. Maybe start by sharing the logic of “We wouldn’t be doing this if he/she were ‘typical,’ so….” And it might take some gentle reminders…perhaps MANY gentle reminders. ut, stick with it and be gentle with them. 🙂 Second, be a good AND consistent role model for the other adults. You can’t ask them to do more than you’re showing them. Third,realize that certain adults may never “get on board.” My husband still interacts with my 18 year old daughter as if she were six or eight. He says it’s his way of coping and I try to let them interact the way they want to. But, that doesn’t mean he gives in any more to her or anything like that. It’s just how they interact — being silly, teasing, tickling, funny faces, crazy voices, etc. When it comes to the real stuff (chores, behavior expectations, etc.), he’s on board with me. Finally, know that most kids realize that adults are different. They know that their teacher expects certain things while Mom and Dad expect something else and that Grandma is entirely different. It’s important to be consistent, but there are always natural inconsistencies between adults in their lives (same for us adults as well) and some flexibility is perfectly OK.

As for getting your child to stay with others, that can definitely be tough, for any child. In my experience, first and foremost, most children (and adults) want to know what to expect. How long, where you’re going, what will happen while you’re gone, that you’ll return, and that their behavior will NOT change those things (for OR against their benefit). No negotiations. Just tell them this is just how it is. It may be helpful to create some sort of picture reminder, especially if your child can’t read. This was really helpful for my daughter when she was early elementary school aged and had issues with transitions. We used picture cards of what was happening now (we are at home in free time) next to a picture of what was happening next (we are going to the grocery store) and a clock of what time that change will occur (when the first number is a 2) next to a clock with the current time. Seeing it and having the person staying with your child remind them of it and show it to them repeatedly if necessary might help reinforce what they can expect. In addition, perhaps start with the amount of time you might comfortably stay away now and slowly build up over each experience. Just like with the babying issue, consistency is the key. If the child knows that they can behave badly and Mom will come running home because that’s what’s happened in the past, that’s what he/she will expect. Make your expectations clear for them and for what they can expect from you and the situation, and they will hopefully be reassured, especially if you can show consistent AND unwavering outcomes.

I hope this helps. I realize the parenting journey is long and difficult and complicated by our children’s needs. What worked for one family might not work for another. Please feel free to email directly any time. (brielleandme@yahoo.com)

Kerith
Jolene on May 15, 2014 at 11:14 am

Hi Kim,

Those are excellent questions. I’ll give Kerith an opportunity to reply before adding my two cents worth.

Jolene
Kim Fultz on May 15, 2014 at 6:42 am

Thank you for sharing your insights. I have a few questions, 1. How do you get your family to back you with not babying your special needs child. I am his main care giver, but when in trouble or trying to make them obey and others go behind you and let them getaway with things or they know to go to that person when they are in trouble and it be okay? 2. How can I get my child to stay with others? Even if it is someone he knows, I can’t stay away longer than 4 hours before he gets upset to the point I need to go pick him up.
Jolene on May 14, 2014 at 7:15 pm

Thank you, Lisa! Passing on good stuff is what DifferentDream.com is all about.
Lisa Nolan on May 14, 2014 at 4:25 pm

What a great and informative list! I pinned it here http://www.pinterest.com/debbie_clement/special-needs/!