Parenting is an exhausting and new adventure for any person. I don’t think many people fully realize how much time, patience, and skill it takes to be a parent before they have children. I know that I wasn’t prepared for this adventure. Parenting is such a long-term investment. You are working on a full-time project for 18 YEARS.
In sum, parenting is hard. It is not for the faint hearted. Everyone who decides to become a parent should be applauded. And it’s totally okay if you don’t decide to be a parent either.
But being a special needs parent just 100X the entire experience.
Overwhelm and Exhaustion
Instead of an 18 year project, you now have a life-time project. There may be no end to this project EVER. (In this post, I’m talking specifically about parents of severely special needs children. The kind that will probably live with you forever because their needs are so severe.)
Suddenly every aspect of your parenting journey becomes vastly different from the majority of parents. You hear them complain about their issues and you stare in disbelief. You start to salivate with jealousy because if you had THEIR issues, your life would be a breeze. I’m not joking. Normal parenting is so easy compared to enduring the challenges of a severely special needs child. If you don’t believe me, then take my son for a month and then tell me what you think.
Isolation and Exclusion
Because your parenting experience is so different than the majority, you are naturally excluded. It is not because anyone is trying to be mean. It is just the nature of the experience.
For example, my 6 year old son has severe nonverbal autism. There are about 5-6 boys around his age that play at each other’s houses every day just down the street. If he was normal, he would be right there with them. But no one ever invites him over to play. And I don’t blame them at all. No one wants to play with a little boy that doesn’t listen to you, doesn’t talk to you, and is chewing on your favorite action figure while everyone else is trying to play with them.
So my son gets excluded. And our family gets excluded because none of the other kids are saying “Oh can we please have Luke and his family over?”
The exclusion leads to more and more isolation for the family. I’ve gotten so used to this isolation that I am actually shocked when anyone tries to invite us to do things with them. “Really?” I think. “You want to do something with MY family? With MY son?”
I think sometimes people think that parenting a special needs child is an incredible blessing because they are such a “special and pure spirit”. But even though they may be innocent, it doesn’t stop them from making your life a complete hell at times.
Common Challenges for Special Needs Parents
Let’s explore some of the reasons why parenting a child with special needs isn’t just “heaven on earth”. Below you will see a list of reasons why you should gladly allow the government to take some of your tax money to support families with special needs children. We really can’t get by without a little respite and support.
1. Poop smearing
Repeatedly smearing their poop. Some kids even try to eat their poop.
I’ve had normal parents tell me “OH YES, that is awful!! My child did that one time. I made them help me clean it up and that helped them to not do it again.”
Well, I’m telling you I can’t make my child clean it up. If they helped out, they would just be trying to smear it some more.
And I’m not talking about an isolated event. I’m not even talking about a dozen times or a phase. We are talking about HUNDREDS of times. I remember the first few times my son smeared poop – it caused some of the biggest fights between my husband and I. We were both shouting at each other about who was supposed to be watching him and who was to blame.
“You were supposed to be watching him!!”
“No, you were watching him!!!”
But now poop smearing is commonplace. “Code brown” we call it.
This is a very common problem for severe special needs children. Of course the ones that are in a wheelchair and can hardly move can’t really hurt you very much. But the ones who have full use of their physcial capabilities but are mentally disabled can cause some big damage.
When children and adults can’t communicate very well, it often leads to frustration. When you have no concept of what is socially appropriate or what things are valuable to other people, that can encourage violence as well.
I’ve heard of parents being kicked, hit, and shoved when they say “no” to their child. I’ve heard of these kids throwing things, punching walls, and banging their heads on the floor.
Of course, ABA (Applied Behavior Analysis) helps with these violent behaviors. But it doesn’t do away with them entirely. As a special needs parents you learn to watch carefully for warning signs and pull your hands and arms out of the way when your child is reaching out to bite you in their fit of anger.
3. Sleep Problems
On top of the violence and the isolation, a lot of special needs children struggle to sleep. They wake up at all hours of the night. Sometimes they don’t understand clocks or how to know when it is time to get up. If we put a red light=sleep, green light=get up simple clock in my son’s room, he would tear it out of the wall and proceed to play with all the parts.
Point is special needs parents are more tired than your average parent. We are usually running on much less sleep. So if we are touchy or say something that doesn’t make sense, that is probably why.
What is most important for special needs parents is to get a break (called respite) from their child. They need breaks just to be able to function like everyone else.
4. Eating Problems
Special needs kids often have eating problems. They want to eat only a handful of different foods and refuse to eat anything else. It is a huge stress for parents.
Often their food issues come from being hypersensitive to textures, smells, or appearances. In our case, ABA was able to help a lot with this, but I still have to spoon feed our son a lot of the time because he has very bad fine motor skills and struggles to use utensils. So meal times are just another reminder of how much harder life is for special needs parents than regular parents.
5. Self-harming Behaviors
Severe special needs children often start self-harming. I have seen kids with bite marks all over their lower and upper lips and chin where they chew on themselves.
It is not always clear why kids like this self-harm. Autistic kids are known for getting stuck in routines or stemming. It could be that they get addicted to the sensation of biting themselves. It might be that they crave that extra stimulation that comes from it. Or they may have heightened feeling of anxiety that leads to these behaviors.
6. Destruction of personal property
Some special needs children don’t have the skills to play or entertain themselves. My nonverbal son won’t even watch TV. So when he gets really bored, he often starts destroying things. He throws rocks and toys over our fence into the neighbor’s yard. He takes books and rips them apart. He chews on toys and kitchen utensils. I have had to learn to hide anything I truly value in a locked room.
We deal with this okay at home, but it is extremely stressful when we go to visit other people. Suddenly it is all THEIR stuff and THEIR belongings that he wants to destroy. Vacations and trips to visit relatives become nightmares. And so we stay at home more and more often – reinforcing the isolation narrative. Here is a clock my son broke at my relative’s house – a mere 5 minutes before we left and while we were packing up to go.
Elopement means that the child runs away. This often happens in crowded settings or just while you are relaxing at the park. Point is as a parent of a special needs child, you can never relax. You always have to be on high alert when out in the community because your child could run away at any moment into a busy street.
From the violence to the self- harm to the eating disorders and the running away, parents of severely special needs kids and adults NEED help and assistance. And some countries are great at this. Sweden has a TON of assistance so that parents don’t get too overwhelmed and want to kill themselves. The state of Colorado in the United States is awesome at this as well. But the state of Utah where I live? Well, despite being the hub for a large group of Christians, it is one of the absolute worst places to live as a special needs parent.
In the state of Utah, they have services to help special needs families. It is called the DSPD (Department of Services for People with Disabilities). They have a lot of good services like respite and health care. The problem is the state government doesn’t put enough money into the DSPD, so the waitlist to get help is 5,000 people long. They only take about 100-300 people off the waitlist a year, so that means you are waiting for about 20 years. And how many people they take off the waitlist depends on the budget they approve in the legislative session each year. There have been several years where no funding is budgeted and no one gets off the waitlist that year.
Things in Utah are so bad for disabled people that many people leave the state to get better help. I’ve thought many times of doing this.
What you can do to help
If any part of you has sympathy for special needs families that deal with these problems, you can do something to help! Please tell your legislators that you want them to put more money into assisting these families.
Here are some links to write your local legislators in the state of Utah. Please write to them and tell them that you want more money to go to helping special needs families.
Here is the link to write your Utah state representative:
And here is the link to write your Utah state senator:
With each of these forms, you put in your zip code and then it matches you with your local legislators. Or you can look up more people to write on this website:
For all people outside of Utah or in other countries, go look up your local legislators. Sorry that I couldn’t list all of them here. Please do all you can to help some of the most vulnerable families in your community: those with disabilities and special needs children. Thank you!!