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27 Secrets Special Needs Parents Don’t Tell You

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.

 

  1. “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.
  2. “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.
  3. “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).
  4. “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.
  5. “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.
  6. “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.
  7. “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.
  8. “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.
  9. “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…
  10. “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.
  11. “Special occasions aren’t fun for me.” You may look at birthday parties and Christmas gatherings as Grab your FREE ebook of 75 tips! via jennyherman.comfun. 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.
  12. “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.
  13. “It’s hard for me to know the difference between hovering and helping.”  That’s self-explanatory.
  14. “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.
  15. “I wish your child would be kinder to my child.” Ouch.
  16. “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.
  17. “I don’t know how to help my child.” I’ve tried everything I know. I’ve run out of options.
  18. “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.
  19. “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.
  20. “I worry about what will happen when I’m gone.” How will she survive? Who will lift him? Who will feed her?
  21. “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…
  22. “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.
  23. “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.
  24. “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.
  25. “I don’t want your pity.” Kindness, assistance, compassion…yes. Pity, no.
  26. “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.
  27. “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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Jenny Herman

Jenny Herman wants to live in a world where dark chocolate dispensers reside on every corner. As a homeschooling special needs mom, she’s been featured in Autism Parenting Magazine, Wit and Wisdom from the Parents of Special Needs Kids: Mostly True Stories of Life on the Spectrum, and various blogs. If she survives the onslaught of testosterone in her home, she may take a moment to blog, read a book, try a new recipe, or loom knit a gift. You can find Jenny’s book The Power of One: Change Your Perspective, Change Your Life on Amazon.

27 thoughts on “27 Secrets Special Needs Parents Don’t Tell You

  1. Unfortunately it doesn’t always change much when the child becomes an adult. In fact the isolation can become much worse. You are ostracized because your seemingly brilliant high functioning children still live at home, fingers point and somehow its your fault that society doesn’t accept their idiosyncrasies (ie, you didn’t work hard enough or spend enough money and time turning them into NT people). Meanwhile, all your friends are starting that second level of their marriage of vacations, time together and grandparenting so yes there is even another layer of jealousy which makes you feel like an awful person underneath it all for a whole lot of other reasons. Oh and FWIW, the money issues don’t get any better, because you are trying to support your adult child (job coaching, new therapies, and therapists) and plan for their future (SN trusts) while you try to figure out money for your own retirement (you wish).

      1. You found me at a rather low point. Not everyone has the same issues I have been facing. One of my best friends aspergean son is married and just became a father. Another friend’s son is working and commutes back and forth to the City. Another friend’s son lives in the City. So please don’t loose hope because of my post. It all depends on how things gel for your child. The hardest part of course is that its really not something you can control.

        1. Elise, when I essentially left Twitter, I lost contact with you. Please know, though, that you’ve often come to my mind, and have been prayed for many times over the last several years. I’m sorry you’re in a low point, and will continue to lift you in prayer. (((Hugs)))

  2. Also add “When adults treat my child(ren) poorly I go from 0 to screaming mimi in 1 milisecond Because I need YOU to be the adult and understand and help, not criticize and punish.” Also “Family gatherings are not as fun because family doesn’t often educate themselves and they label my child, are annoyed by my child and critique my parenting choices.”

    1. Yes to family being stressful!!!!! My in-laws have 18(!) grandkids! My son isn’t autistic, but he has a host of other needs, and has only been with us 18 months. My in-laws (all of them) have been extremely supportive, but they just don’t get it. I can’t relax for five seconds!

  3. After raising a daughter who went into the military I thought I had this parenting thing down until my son was born. He was doing unusually things that I knew wasn’t right… Screaming when the Sun shinned in his face, walking on his tipetoes, losing control in public places, and countless other things. I meet a superhero name Jenny Herman who gave me some materials that helped me to get the proper help for my son. Its a lot of work but God gives his toughest battles to his strongest soldiers. I partnered with another parent and we formed a support group. Don’t give up…. Thank you Jenny great job..💝

  4. Such a great post. I found myself nodding along with every point! Thanks for putting together this list! Sharing on Birdhouse for Autism’s Facebook page.

  5. I would like to add .
    Yes I would love to go out and have a girls night out , oh wait I can’t my son refuses to stay with anyone at night but me because I am his rock !!! Shoot he can only handle a few hour during the day away from me !!!!

    1. Thanks for commenting, Sara. This is one of the reasons the support group a friend and I started ended up turning into a Facebook group. Most of the moms couldn’t get out for one reason or another!

  6. I would also add..just because I am open and honest about my kids difference and that we chose meds doesn’t mean you should use it against me. It’s never ok to ask me if I medicated him or if I plan to for X event. It’s a hard choice and balance so support which ever choice I made that day or move along. Also, sometimes your kids are misbehaving don’t blame mine because he’s available.

  7. Wish I had had this article to read when my son was younger! He’s now 32 and some still apply with others added. While my friends are enjoying the spontaneous lifestyles that come with being empty-nesters, my life is still the same. It’s quite difficult to find a sitter for a grown man that also happens to be nonverbal! I will say to all the young moms starting on this journey…give yourselves a break! Pat yourselves on the back every now and then for the tiniest of successes. Sometimes it’s just a smile after a LONG day…

  8. You read my mail!

    I’d add that the fact that we constantly have to add the disclaimer, “this is not a woe-is me.” I refrain from posting sooo many great articles because I know my friends won’t bother to read them and just seeing them will result in eye rolls. 🙄 I know they would claim otherwise, but going back to the #’s on this list about this being all we have going on, and it constantly being a factor….. I catch the unconscious grins and bigs eyes that scream, “enough….”

    We had a church small group we went to that almost disbanded because they didn’t want my son at their house, but they didn’t want to specifically tell us we were unwelcome. ☹️ The next week an opportunity came up for me to express how frustrating it is to have a child with autism that is so incredibly high functioning on an academic and abilities level, but who has the emotional maturity of a toddler, because people forget that he is autistic… AND HAS THE EMOTIONAL MATURITY OF A TODDLER. So….. they ended up finding someone else’s house to have it at. I’m looking for a new one since we’ve moved and facing the same issue.

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