Have you ever wondered what life is like for your friend who has a special needs child? Are you a special needs parent wondering if you’re the only one who feels this way? Here are 27 things that special needs parents tend to think but not say out loud. This list comes from personal experience as an autism mom and from listening to the stories of others.
This isn’t a woe-is-me post. It’s meant to help others understand.
- “I’m sorry I don’t have more to talk about besides my child.” I’m spending hours researching possible therapies and treatment. I don’t mean to bore you by talking about it all the time. That’s just my world right now.
- “I don’t want to research any more therapies or treatments.” I’m content with what I’m doing. Please don’t be offended if I’m not as excited as you are to hear about new treatments. I may also be just plain tired of research and need a break.
- “I don’t have much to say.” I want to hang out with you, but I’m too tired to think of anything to say, or I don’t want to bore you (see #1).
- “I can’t spend money on things you do.” I don’t have much money left over for fun extras like dinner out with friends, a pedicure, or a shopping spree. My money is tied up with supplements, treatments, special dietary needs, therapy items, etc.
- “I want to get together with friends, but I can’t.” This could be due to lack of funds (see #4), lack of time, lack of energy, or simple lack of a caregiver. I have a very difficult time finding a babysitter for my child.
- “I’m not whom I used to be.” Parenting a special needs child changes your life. There are pros and cons to this. Things I once loved are intolerable for my child. I do not have time for old hobbies. My priorities and goals have changed. I’ve become bolder and braver as I’ve learned to advocate for my child.
- “I’m lonely.” Special needs parenting can be lonely. I have an abundance of appointments. My child’s sensory needs and myriad other things keep me from getting out with others. Sometimes my friends leave because they don’t know how to deal with the situation. Honestly, sometimes I withdraw because, well, see #3, #5, #4, and #6.
- “I have to think ahead of different possibilities and plan for the various outcomes. I’m not trying to be a control freak.” I have to think about where we are going and what we are doing. What will I do if he doesn’t like the food? What if he thinks something is too loud? How will I handle it if he is overstimulated but I don’t have my own car? People may look from the outside and think I’m trying to control every little thing. I’m just trying to plan ahead so I am prepared with what I need to handle the 107 different possible reactions that could happen.
- “Social situations exhaust me.” While you sit on a bench at the playground and read, I watch like a hawk to see if my child is communicating with words instead of pushing when someone bothers him. Or, I’m watching to see if other kids are bullying. Or, I’m watching to make sure my child doesn’t run off into traffic. Or, I’m watching to make sure my child doesn’t eat wood chips. Or, I’m watching to make sure my child doesn’t jump off the top of the playground equipment because he has no concept of safety. Or…
- “Some days I wish my child could eat what everyone else can eat.” Packing up special foods to be able to attend events gets tiresome. So is packing up the gear my child needs.
- “Special occasions aren’t fun for me.” You may look at birthday parties and Christmas gatherings as fun. I look at them as exhausting. In addition to #8, #9, and #10, I have to consider how long my child can handle a situation, what others expect, how my child will react to things, and so much more. It’s just not fun.
- “I get tired of the meltdowns.” It’s often hard to discern the difference between a tantrum and a meltdown. It’s hard to admit I get tired of my child’s behavior and wish it would just go away. It’s hard to say I grow weary of dealing with the fallout that comes from stretching her.
- “It’s hard for me to know the difference between hovering and helping.” That’s self-explanatory.
- “I don’t want to debate my choice of ___.” Insert education, therapy, treatment, etc. There are so many options and opinions out there on how to help a special needs child. I have done my research and testing. This is what we’re doing for now.
- “I wish your child would be kinder to my child.” Ouch.
- “If only I could figure out how to help my child and your child get along.” Sometimes it’s not a matter of bullying. Sometimes it’s childhood and strong personalities and trying to determine how to explain to your child what my child experiences.
- “I don’t know how to help my child.” I’ve tried everything I know. I’ve run out of options.
- “I feel badly for my typical child.” Special needs siblings are a special breed. They learn so much about how to be kind, compassionate, helpful, resilient, etc. But sometimes they often get the short end of the stick.
- “Please don’t judge my house. I know it’s a mess.“ When your kid screams over a drop of water on his pants, spots on the floor don’t get top priority.
- “I worry about what will happen when I’m gone.” How will she survive? Who will lift him? Who will feed her?
- “Sometimes I get jealous.” I wish I could do what you do. I wish I had a nicer house. I wish I didn’t have medical bills. I wish I could wear nice clothes. I wish…
- “I feel like a failure.” My child still struggles with ___. I let him down when I didn’t stand up for him soon enough. I should have taken her out of that situation sooner.
- “Occasionally I sit in a parked car by myself and cry.” I get a few minutes alone and I don’t have to let my child see me crying.
- “I need help.” I cannot care for my other children and my special needs child and get it all done. I cannot keep her safe. I cannot keep the house clean when my son needs solace much of the day.
- “I don’t want your pity.” Kindness, assistance, compassion…yes. Pity, no.
- “I’m not a superhero.” I’m just a just regular person doing the best I can. I will admit, some days I wear my Captain America t-shirt for a psychological boost.
- “Some days I want to give up.”
Yes, sometimes I want to give up. But I won’t.
So. Did I forget something? Let me know in the comments!
You may also like “30 Ways to Help a Special Needs Family“.
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