This blog was originally shared in 2018, written by Katie Emanuel. You can read more from Katie on her site, ‘wholehearted mom’.
Why families of children with special needs need help:
Before I became a parent, I thought a little extra hard work would be enough to make it through the valleys of parenthood. When I became a special needs parent, goodness, I realized how wrong I was.
Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments…and advocating for him in the medical and educational system. – 7 Things You Don’t Know About A Special Needs Parent by M. Lin
When our son and daughter were diagnosed with special needs, we struggled with how to ask for help. We were drowning in therapies, IEP meetings, specialist appointments, and bills to boot. I felt ashamed to say, “I’m treading water,” when my friends with neurotypical children seemed to be doing fine. And, honestly, I worried what people would think. If I admitted I needed help, wouldn’t they think I was a bad mom? The more I opened up about this struggle with my friends in the special needs community, though, the more I came to realize I was not alone in feeling this way.
Asking for help takes courage
Asking for help can feel hard. It requires us to admit we can’t do it all, and that can be a hard pill to swallow. But the truth is no one can walk this journey alone. Where I once believed I just needed to work harder to show I could do it alone, I’m now a firm believer that part of our calling as special needs parents is to invite people to walk alongside us on our journeys. To accept help from those who care about us. And to ask for help when those around us don’t know we’re drowning. Whether you are a special needs parent who needs a nudge to ask for help, or a friend of a special needs family who needs ideas on how to help, this list is for you.
20 Ways to help a Special Needs Family this year
Childcare and Support
Special needs parents need breaks, but finding loving caregivers can be challenging. Offer to babysit for their children for a few hours so they can go out on a date or simply catch up on some much needed rest.
2. Take their children to and from school.
Offer to give siblings rides to and from school! This is such a gift not only to the parents, but also to the children. What a treat to be picked up or dropped off by a friend!
3. Learn about their child.
Beyond googling their child’s diagnosis, learn about your friend or family member’s child specifically. The saying is true, if you’ve met one child with a disability you’ve met one child with a disability. Lovingly ask questions and listen to their answers. Spend time with them and their child. You’ll learn more than you ever imagined!
4. Light housework.
With so much to do each day, housework can pile up for special needs families. Offer to do a little housecleaning and it will be appreciated more than words can express!
5. Help them sort and organize.
Our families are buried in paperwork because everything requires it. From our children’s IEPs, to medical documentation, to data collection, to applications for services, the paperwork is boundless. Sometimes, we just need a helping hand to go through it all and organize it before we can act on it. (Want to help figure out what information goes into an IEP? Here’s a cheat sheet!)
6. Make meals.
Making meals takes time and time is often scarce. Make a meal that they can simply heat and eat — what a treat! *Be mindful they may have dietary needs and be open to those needs.
7. Walk their dog.
Offer to walk the family pet while they are at an appointment, work, or school and watch their hearts melt as they see you care not only for them, but for their fur baby as well.
8. Grocery shop for them.
If you have children who are in school or who can make it through the store with relative ease, offer to pick up a few things at the grocery store. Our families are often juggling meltdowns, adaptive equipment, and judgmental stares while they shop. By shopping for them, you will save them not only hours of time, but also a great deal of stress.
9. Ask them how they are doing.
And encourage an honest answer. Oftentimes, special needs families feel like they have to put a positive spin on their situation because they don’t want to come across as complaining or weak. They need to be able to let off steam, though, and be honest about how they are feeling – happy, sad, or anywhere in between.
10. Send them a handwritten note.
Sometimes, there is nothing sweeter than getting a card in the mail from a friend or loved one that simply says, “I love you and I’m rooting for you.
Our families need to talk and be heard without judgment. Try to avoid giving advice and focus instead on offering love and encouragement.
12. Send a text message or email.
Keep it simple and don’t require anything from them in return: “I’ve been thinking about you and wanted to say hi! I know how busy you are so don’t worry about writing back. Just know you are loved!
Thoughtfulness and Flexibility
13. Invite and keep inviting!
We love being invited and attending anything we can. Even if we can’t make it, being invited means so much. If we have to say “no,” invite us again in the future!
14. Be open to plans changing.
Special needs families’ plans can change on a dime because their children’s needs can change on a dime. Try to be understanding and not take it personally if plans have to be cancelled or changed. Relieving us of the pressure to make it to an event if our children simply aren’t up for it is a huge help!
15. Try to be mindful of their time.
Be considerate of their time and hectic schedule. If 30 minutes to visit is what they have to give, lovingly enjoy it! Don’t make them feel guilty for what time they can’t give. Instead celebrate and cherish what time they can give.
16. Keep advice to yourself (unless we ask for it).
We need empathy, not advice. Believe me, I struggle with this one, and I am a special needs mom! But what we need most is empathy and compassion, not ideas on how we can be better parents. We are constantly weighing the advice of specialists, educators, therapists, and providers. Let us talk about the advice we are receiving and, if we ask for your opinion, please offer it! Otherwise, try to keep advice and opinions to yourself.
17. Be a friend through thick and thin.
It sounds so simple, but it’s perhaps the most important of all. Be a friend through the good and the bad, seasons of contact and seasons of distance. Forming friendships is not easy for our families because of the restraints on our time, energy, and finances. If you’ve formed a friendship with a special needs family, know how special you are to them. Reach out, offer to help, extend love and kindness through it all.
Give, If you can
18. Give a gift card.
Talking about finances can feel awkward, but the truth is the financial aspect of being a special needs family is overwhelming. Most families’ budgets are extremely tight in order to pay for their children’s therapies, appointments, copays, transportation, childcare, special programming, dietary needs, medications, and more. Additionally, quality childcare is expensive and difficult to find. A gift card for gas, groceries, or copays goes a long way!
And we’d like to add…
19. Be real.
Don’t be afraid to be you. If you are having a bad day, a bad week or a bad month, lean on your friend. Helping someone else get through something tough, or lending an ear to someone that needs it, makes me feel valued as a friend and honestly, sometimes the break from my own life is refreshing!
20. Be silly.
Life as a parent can feel heavy. Depending on the needs of our children, sometimes it’s an emotional rollercoaster, sometimes it’s physical exhaustion, sometimes it’s both. Humor can bring levity to help lift us up and give perspective. Laughing with friends is sometimes exactly what we need to keep going!
There you have it. Twenty ways you can help a special needs family this year. Here’s to a 2020 full of compassion, kindness, and love!