10 Things Parents of Adult Special Needs Kids Want you to Know

When you’re a parent, you are constantly worried about the future of your children.

You have high hopes for the future they will have and want nothing more than to see them spread their wings and soar. You prepare for the day when they leave the nest—sometimes tearfully. You watch with bittersweet tears as the child you raised to be independent and thoughtful becomes an adult member of society.

The thing is parents of special needs kids want the same things for their kids. Their desire to see their special needs child spread their wings and soar is tempered by the knowledge that their child may never be able to make it completely on their own. This is a very real and very omnipresent thought parent of adult special needs children have.

Thankfully, more and more, businesses and industries are recognizing the need to make a place for adults with disabilities in the workplace. Giving our adult children the ability to be productive members of society and as independent as possible gives them a sense of accomplishment they deserve!

With that said, here are 10 things parents of adult special needs kids want you to know.

  • We Are Very Concerned About What Happens When We’re Not Here.

We know you might mean well by asking if we have a plan in place for after we pass on for the care of our special needs adult child. But really, this is a question that keeps many of us awake at night. This is a niggling fear that we have struggled with for years. Many of us have a plan in place and have trusts set up for the time when we cannot be here to care for our special children anymore. But really, we appreciate your concern. Moreover, instead of just asking out of conversation, help us find resources that are beneficial to us.

  • We Celebrate Our Children’s Burgeoning Independence Differently

We are very aware that our child isn’t likely going off to college. We prepare for different milestones, however, and celebrate those milestones with the same gusto and pride you celebrate junior’s high school graduation and college acceptance. Whether it’s admission into a group home we’ve been waiting for ages to hear from or perhaps a great job with a company who works with special needs adults—we are just as proud and have the same bittersweet feelings you do.

  • You Don’t Need to Temper Your Pride in Your Child in Front of us

We know how big these moments are. There is no need for you to downplay your pride in your “normal” child because our children might never have the same experiences. We have our own moments of pride to share, too! We want to hear about your child and the excitement and fears you have regarding their major milestones. After all, we are all parents, and it takes a village!

  • Speaking of Villages, Sometimes our Village Could be Bigger

Being the parent of an adult special needs child comes with its own set of challenges—especially once our children age out of certain services. That means programs, such as school (high school programs only serve special needs individuals until the age of 22) are no longer available. This often means that the parents or caregivers have an immense amount of stress and pressure to care for our kids 24/7. And while it’s a job we wouldn’t trade for anything in the world, it can sometimes be exhausting, and we can sometimes use a break! Offer to give us a break—even if it’s in the form of a walk around the block with our special needs child. Sometimes just a quick breather is all we need to feel reinvigorated and ready to face whatever else comes our way.

  • Get to Know Our Child

Our adult special needs child is just like anybody else. He has interests and hobbies and skills and a huge heart. Taking the time to get to know him—REALLY get to know him. It would mean the world to him—and to us! He is, in fact, an adult, just like you!

  • Don’t Treat Him Like a Child.

Yes, we know our adult child’s cognitive abilities might not match your adult child’s. But that doesn’t mean he needs to be talked to like he’s dumb or like he’s a baby. We have worked very hard to achieve a certain level of independence and talking to him like he’s a child is not only condescending but very discouraging. Talk to him like he’s a person, even an adult—because he is.

  • Don’t Call us Saints or Super Heroes

We often have to do more than other parents to achieve the same results. But we don’t do it for the notoriety or the attention—we do it because we have to for our children because we love them just as much as you love your children. We do what we need to do to get through each day, week, month, and year. We’re not superheroes. We aren’t saints. We’re just parents who will do anything for our children. The same as you or anybody else.

  • Don’t Pity Us

We don’t want your pity or your admiration (just like I said above). We just want the same thing for our children as you want for yours—for them to grow up happy and healthy. Many special needs kids require a lot of medical attention. And they grow up to be adults who require a lot of medical attention. While it may take a lot of time and resources to get them the medical interventions they need, we want nothing more than for our children to be happy and healthy—just like you.

  • It’s OK if you Don’t Know What to Say

It’s amazing the things people say to parents of special needs adults and children to make conversation. Generally, we know when you mean well when you say something like “oh, that’s a shame.” Or “I’m sorry, I didn’t know” when asking about our children or learning about their special needs. Really, it’s ok if you don’t know what to say, though. It’s fine just not to say anything. Or better yet? A great response is “he sounds like an amazing young man.” Because you know what? He is!

  • Teach Your Children About Differences

We know that our adult special needs child makes some strange noises. For some children, when we’re in public, it might even be a little frightening. We have heard some different responses from children and their parents over the years when we’ve been out and about. From “why in the world would they bring him HERE where there are younger children” to little children asking, “why is he making those noises?” only to be shushed by a well-intentioned and embarrassed parent.

Let me say this: for those wondering WHY we brought our special needs adult child out in public—we do this because we want him to have every opportunity at normalcy and independence as possible. That sometimes when we leave the house, it is with a panic bag filled with supplies and about a hundred moments of “maybe we should just stay home today and try another time again” before finally going out to Target or the Park or the new restaurant down the street. And for those parents who are embarrassed by their children’s questions, it’s ok. We know our son looks and sounds different. Use those moments as an opportunity to teach them not everybody is the same. It’s OK to ask us questions. We don’t mind, and we don’t bite. In fact, our child would likely love the opportunity to meet more people!

We realize that most people don’t mean to be intentionally hurtful. Sometimes people really do have the best intentions. We realize our situations are different than most. We realize that the lives we lead are different than yours. But really, we’re all still parents. So how about we use that common ground as parents to break the ice? Most times, we’re very eager to have the opportunity to brag about our amazing kids, too!

HCBS Provider, Inc.

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