Things Hard for Me to Admit as a Special Needs Parent

It’s sometimes hard to be honest as a special needs parent when I’m trying every day to be strong for my children and those around me. Whether you’re close to a special needs family or not, here are a few things hard for me to admit but that I’d like you to know.

1. Sometimes I feel alone.

As a special needs parent, isolation is real. Sometimes when things get difficult, many “friends” disappear because the situation is “too hard to watch.” As nice as this sounds, I know I’m being “politely” avoided and removed from the lives of these so-called friends.

As a special needs parent, I’m in a unique situation. I know others will not intimately know the details of our child’s diagnosis or abilities, and this can lead to feelings of isolation. This is only exaggerated by other people’s unwillingness to learn. I need true friends who are willing to stick it out when times are tough.

2. I feel left out.

I appreciate hearing about your fun overnight stay or family vacation, but that is not a reality for my family. But don’t mistake our lack of outings with the lack of desire to have them. It’s just difficult to ask for the required help, so we often find ourselves overlooked. It’s assumed we “have too much on our plate.” Let us decide what is too much for us. We are still capable and have the desire to help others, go out with friends or be included in events/outings.

3. Money is always an issue.

Many special needs families struggle to pay for the rotating door of medical expenses and/or special equipment that is sometimes needed. Neither is cheap, and getting assistance can be difficult.

4. I take your opinions into consideration, but I know best.

Only time and effort can bring real solutions, and I have logged in plenty of both. Sometimes it’s better to keep the opinions to a minimum and just offer a helping hand.

5. I’d love you to teach your children tolerance.

While some special needs individuals do not have the ability to demand tolerance, their loved ones do. If your child teases or bullies our children, expect to hear from me. I’m used to fighting for my children and will not hesitate to speak up.

6. I hate when you assume our child will “grow out of it.” So stop asking.

This is by far the most annoying question I’m asked as a special needs parent. We heard this question by nearly everyone when Bella was diagnosed. These well-meaning people would ask and seemed to wait tentatively for validation. So for you to be OK with the diagnosis, it has to be short-term? No matter the term of the diagnosis, families like mine are dealing with the here and now.

7. I’m tired.

A great deal of diagnoses carry the fine print of sleep deprivation. Be considerate when discussing your poor night of sleep. I’m on years of sleep deprivation and, as a result, often feel the physical and mental repercussions.

8. I don’t have all the answers.

I’m still learning and every day brings new challenges. I research and ask as many questions as I can, but usually a new question follows a solution. Be patient with me and my family. We’re doing the best we can.

9. I’m well aware of our child’s challenges…

…and don’t appreciate you pointing them out. 

10. I need support.

I may not always say it, but I need it, and if it sounds like I need help I probably do. Offer to do the “hard work.” These tasks may require you to feel uncomfortable or lose sleep, but they are the things I will not forget. Sometimes it feels like I live in a constant state of chaos — help me get away. No one can withstand this type of existence without feeling a little frayed. Stepping in for any amount of time makes a world of difference.

11. I notice when you stop asking about my children.

My child may not be on the honor roll or in sports like “typical” kids, but she still has accomplishments. Acknowledge the effort my child makes to do what most typical children take for granted. I guarantee she’s worked on these tasks for a very long time.

12. I need to vent.

I am thankful for the opportunity to raise this special child, but it’s a stressful job. It can be “depressing” for you to hear, but this is my reality. Please allow me a place to talk honestly and unload. And I want to do the same for you.

13. Going out in public is hard.

I’m on guard in public places. I’m aware of whispers and stares. I also know I have the right to public space. I do take others into consideration when situations become difficult, so please do the same.

And I do want you to know…

Special needs parenting changes the heart and mind. Parents like me can be the most empathic and patient people you will encounter. And although I often face a great deal of difficulty with a smile, I’m sometimes hurting somewhere inside. The guilt of not knowing or doing enough is constant. I often feel like things will never get better and yearn for friendships that will withstand.

But know I only wish to change the world for the better for children like mine. I want others to see the true gift of a child with special needs.