15 Reasons Why Its Hard To Get Along With Special Needs Parents

Special Needs Parenting

Have you ever wondered why parents of kids with special needs always seem to be so cranky?

Or why we tend to make really inappropriate remarks so often?

Or why other parents of kids with special needs laugh at those inappropriate remarks like it’s an inside joke?

The Life We Live

Special needs parenting is a lifestyle.  For many of us, it is not the lifestyle we chose.  And even if we did choose to become a special needs family through adoption, there are still plenty of reasons to be cranky – and then joke about it later.

Here are 15 possible reasons to explain the mysterious behaviors of some special needs parents.

1. Already changed the sheets twice before 7am and cleaned excrement from some very creative and almost-inaccessible places.

2. Spouse drank the last cup of coffee in the house.  The rest of the coffee was dumped on the kitchen floor and eaten by an ecstatic child yesterday before it could be fully cleaned up.

3. Mixed the g-tube formula, fed daughter, cleaned up, got to school on time, then listened to the neighbor complaining that her 8 year old refused to eat broccoli at dinner last night.

4. Was up with a wide-awake child from 2am to 6am, then awakened by a phone call at 11:45 am.

5.  It was the pharmacy leaving a voice mail explaining that the medication refill will cost $500 out-of-pocket.  The medication is necessary for a life-threatening condition, so not refilling is not an option.

6. Just learned that the “zero tolerance for bullying” policy at school is actually a “we tolerate bullying unless your speech-impaired child gives us a name” policy.

7. Sent three polite, respectful e-mails so far today to the school team.  No more politeness remained after that.

8. 90 minute screaming meltdown 3 times per week – and we’re overdue for one, so it’ll probably be today.

9. Those meltdowns come with injuries.

10. All the remote controls in the house, including the garage door opener, have either been destroyed or have disappeared.

11. A person with good intentions said, “G-d chose you to be his parent because of your patience.”

12. Another person with good intentions said, “G-d only gives us what we can handle.”

13. While signing school papers, two kids were talking directly into each ear.

14. The child with a disability brushed his own teeth, dressed himself and tied his shoes while his able sibling refused to brush teeth, refused to get dressed and rolled on the ground instead of putting on shoes.

15. Had to decline a bunch of invitations to weddings and family reunions again this year.

Are you difficult to get along with today?  Why?

Karen Wang

Written on 2013/03/13 by:

Karen Wang

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"
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  • Jane Brooks

    well I see most of these dates are older but I’m going to make a comment anyway. I’m just flabbergasted that you didn’t mention the stress some parents feel having to go through due process , just for the right to music or access to print.

  • BMT

    Oooooh! The coffee! That was us a couple weeks ago.

  • HappyElfMom

    Everyone pretends to love special needs children until they have to care for or interact with one on a regular basis. It’s no wonder we parents eventually start waking up with a “F you all!” attitude. And mean it. I think life would actually be easier if people didn’t pretend to care.

  • Jay

    I don’t understand why God is typed like it is some sort of profanity in your article.

  • Towanda

    A number of years ago, my husband and I swallowed our pride and made a conscious effort to reach out to family to see if anyone would be willing to take our special child on an outing (library, park, book store, having lunch) once a month, or even once a year! In some families, you don’t have to ask anyone to do anything for your kids (whether they have special needs or not) because they are that kind of family. Neither of us have “that kind of family.” We asked because a) we needed a break and b) our child needed to interact with someone other than her family of origin. Here are the responses we got: “Don’t they have organizations for that? If not, let’s get one started!” (Umm, if we were looking for an organization, we would have done that. We want her to have a relationship with YOU…family.) “This is a moot point, but did you consider having an abortion? I could do something with [Penelope], but WHAT?” (This came from a very religious, church going person). “I can’t do that.” (this person looked at me as if I had asked him to fly to mars on a jet mobile and bring back a martian). Fast forward a few years and my child is not close to these relatives (surprise!) and yet one family member is promoting herself as the “good relative” because she spends a lot of time TALKING about what needs to be done for people with disabilities. I quietly roll my eyes and think to myself, “Blah blah blah. There are always people available to do the TALK but very few do the walk.” I walk it every day with my daughter – mostly with pleasure and definitely with confidence. And while it’s rare that I am in a bad mood or have a bad day because of anything having to do with my daughter, I don’t ever apologize for it.

  • Teresa

    I don’t have a special-needs child but anyone who doesn’t “get” the energy and effort required to raise one must be clueless to much of life. I admire the work each of you does every single minute of every single day and I do not judge misbehaving children in public. We’re all fighting a hidden battle…

  • Irest Mycase

    Dont feel for me, just be thankful or grateful you are not in this role : x)

  • Brooklyn mom23

    Amen …..im not difficult lts the other ignorant know it all perants who try to dictate to me like if i have it easy and dont really no ive been up all night had to fight with one. child to put on shoes and another so on…… haha i love this post

  • bigskyot

    As an OT and mom of a child who had ADD and sensory issues, I would try to remind other therapists to be mindful what they tell parents to do at home. If the therapist wouldn’t be able to fit in or sustain these techniques or homework with their own “typical” children, why would parents of a child with significant challenges be able to do it well. Sometimes we have to remind ourselves, we are all doing the best we can at this moment in time. And, yes this dark humor relieves stress sometimes. If you don’t laugh, you may just cry. Hang in there everybody!

  • Rachelle

    I am a mom of 4 children 2 boys 2 girl. My oldest son is 11 and has ADHD, Autism, Sensory integration, and Anxiety…This is the Story of my life. Explains a lot! I do love my children ALL of them, and love them just the way they are, but it is not the path I planned for and expected. It is HARD! I have changed the sheets of a 9 year old child- cleaned smeared feces for YEARS when sensory integration and autsism met to make a very creative, frustrated, and outgoing child..I do not lie that I have flashbacks that give me chills when “normal” parents talk of feces smearing on a one time occasion from a curious toddler. I worry more then any parent should have to about my child not fitting in and being labeled the odd kid- yet I must also find a way to balance that and teach him he is who he is to be proud of that and we love him just the way he is. I am exstatic if my child gets a english grade of 65 for this means he passed! He struggles with that area but can ace a math test without trying. I have to find a way to make my other “normal” children understand that their brother is the way he is and that is OK….It is a great teaching tool on loving everyone for who they are, but the reality is some of the things they must accept are weird and hard to accept for us “normals”. I can not count the times I have had to fight with an 11 year old on tying his shoes….I also can not cunt the times his 6 year old sister has thrown a tantrum and rolled around screaming that she will NOT do what I have asked because it does not fit what she wants right then- She is one of my “normal” kids and is actually being tested as gifted.Then add the trips to a store ( a trigger for my autistic son) and the looks and stares you get with an 11 year old in a cart screaming and pulling on his hair telling you he hates you….If one more person gives me that look or mentions under their breath not my child NEVER..or tells me he needs his a$$ whooped good once and that would solve it. His own grandfather tells me if we just disciplined him more and gave a good butt whooping he would not have the issues with food he does. ( He is picky, will not eat anything with black on it, only likes certain brands of some things.) Those are the days I thank god he is mone and not his grandfathers child back then.

  • Ann

    I sometimes get kind of worn from hearing from literally every stranger who speaks to us, amd it seems to be many of them….my child is a very notable apraxic autistic……but every one of these strangers says they have a relative/friend/neighbor who is “just as nonverbal and autistic” or “severely disabled” or “asbergers” or “special needs and/or the same kind of disability” as my childs. It seems, if they are telling me true, that the entire world is nothing but apraxic autistics and similar and/or special needs. Yet, they all ask the same questions – very generic questions that really make me wonder if they have any actual contact with such apraxic autistics at all, in real time experiences. And they always have generic advice by the boatloads. I guess they are well meaning. The advice is never solicited by me, amd really, my hands are usually quite full trying to manage the child, while these well meaning strangers prattle on in their self-absorbed smiling effort to “relate”. It creates more immediate problems than i can usually handle successfully. they never want friendship with me. My other children now grown have virtually no close friends either. We sort of think most people we encounter do not grasp the situation. And many do not want to. So we plod on as we are, and do what we do, and love the youngest who needs us, with all our might, however we are able. We dont really worry any more about “people” since it seems our world is pretty much going to be what it is going to be.

  • Crmy Coco

    As a single parent of a little boy with Spina Bifida, I think some parents of special needs kids need to chill. I don’t understand getting bent out of shape every time someone says “boo!”. My son has been in a wheelchair since he was 17 months and I have no problem with ppl staring at him. We stare back. Sometimes we say hi. I act like my son is a rock star and he gets treated as such. I don’t cringe when other children say things. Usually they make innocent, sometimes humorous remarks. Many ask why he’s in a chair. Since my son is non-verbal, I explain to them what SB is. One time we were in Target and a little boy shouted, “Whoa, dad! I want one of those things!” His father quietly asked him why and the boy said, “Cuz I think they’re cool!” He was referring to my son’s wheelchair. I chuckled. Only once did a little girl say she felt sorry for my boy. I gently but firmly told her not to and explained to her he was just like her only challenged. She seemed reluctant to let go of her pity, but I didn’t vex it. We keep it moving. I spent a delightful 20 minutes explaining to a transgender person what a SB and they were quite fascinated. Mostly we get smiles. A lot of ppl like to share their family stories with me. The only person who has said anything inappropriate about my boy was my mother and if you knew her you would understand why. I sent her a polite email with a link to some exciting ppl doing exciting things in their lives who live with SB, and then I promptly stopped talking to her. Because we keep it moving in my home. I don’t care if ppl with “normal” kids think they know what I go through. They don’t need to understand me. They don’t need to understand I stay home much of the time because it vexes my soul to have to break down and set up the wheelchair every time I want to go somewhere. I spend a minimum of 2.5 minutes getting in and out of a car and always have to pack a small arsenal of equipment required on every venture outside the home “just in case”. So when ppl say, Oh just do this or that, I promptly say no. Not today. Period. Yes, my days are infinitely frustrating, esp now that I’m in school. And it can be annoying when ppl with good intentions say stupid things, but at least the intention is good. The idea the world has to turn upside down and accommodate our personal space is ludicrous. There is no earthy reason why ppl without special needs children should understand us without knowing us. Most ppl respond positively to education and those who don’t can kick rocks. I guess there is so much frustration already associated with being a parent of a disabled child, I don’t feel the need to add to it by piling on other ppl’s ignorance. Teach ’em or toss ’em is my motto. And keep it moving.

  • Char Fox

    What I wouldn’t give to not only hear family and friends tell me “Lot’s of single parents manage”, and the ones listed: God chose you to be his parent because of your patience and God only gives us what we can handle…which isn’t even in the Bible by the way, but to also have some help just to rest. I attend a church of about 250. Not one person offers to help out while knowing what I deal with. Mostly it’s people complaining about my son’s behavior and often some think he’s just normal and needs discipline. They look at me like I’m a horrid mother because I can’t discipline my child.

    Parenting special needs is hard, doing it alone is downright next to impossible. Trying to get my son ready for school in the morning is nothing but frustrating. He wants to roll in the floor, pet the cat or just sit and pick dead skin from his feet (aspergers syndrome), or he’s talking 90 miles an hour about anything and everything and not hearing a word I’m saying to get him to get ready (ADHD), or having a yelling fit at me, kicking the wall, slamming the door because I couldn’t wait on him to dress, so I picked his clothes out for him. I leave the house at 6:45 to get him to the bus, work all day in a stressful job (that pays well but barely makes the bills because of all the medical and higher daycare costs), then I get him from daycare and get home around 6:45 to fix dinner, get him to take his meds, do his asthma breathing treatment, take a bath and get in bed.

    So where’s the play time for him or downtime for mom? It’s non-existent most days. My family won’t help or can’t help. No neighbors to turn to. The church won’t help. I make too much (since they won’t count added expenses) to qualify for any help. I can’t even take off for PTA meetings at the school, so the school thinks I’m a terrible parent, but all my vacation and sick time is taken up in multiple doctor appointments for me and him since the stress has cause major health issues for me. He sees a therapist and psychiatrist once a month, then his pediatrician, and allergy doctor every few months, have an eye appointment coming up. And while they joke about it at work that I’m never there, it’s just hard to deal with it all. I’ve begun to think my only recourse is just go on welfare so I can rest and get him the help he needs, but what good would that do but leave me stuck for life. At my age (which is also a factor, raising a 9 year old with these problems when I will be 50 in a few months), I would not be able to get re-employed later if I did take off work for time to raise my son. So I’d forever be at the mercy of government assistance. But I need a break. And even when it comes it doesn’t.

    He was with his dad (no comment there) during Christmas break, so I had time in which I could’ve rested, but who has time? I was able to repair the things that needed repaired in the house, clean up the after Christmas mess, get shopping done without a child bouncing around the store (which people also stare and look at you like “why don’t you get control of your child who’s kicking the food on the shelves?!”

    The stress of it all is literally killing me. In the past three years, I’ve been diagnosed with osteoarthritis, fibromyalgia, joint disease, TMJ, Plantars Faciitis, sleep apnea, etc. I stay in pain, physically and emotionally.

    And then I see someone come here and tell people to not bash their kids! Some days I think I wouldn’t wish this life on anyone…til I see comments like that. Then I just pray (God forgive me) that they get to experience the joys of this life. And quite frankly, people who do this, do tend to get hit with those trials at some point. It’s the only way God can teach them about empathy.

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  • Amy

    I have trouble accepting that I am part of the “special needs parent club.” I am still in denial and starting to come out of it. You would think I would have accept it by now since I have been taking my son to specialists since he was 2. I have shuttled him around to OT appointments, PT appointments, Therapy appointments, his yearly appointments at Children’s Hospital because he has Muscular Dystrophy. Yet because he “looks normal” and is highly verbal, even I have trouble accepting things as they are. He was in EI and now in Pre-K on an IEP. I think I have trouble accepting it because my closest friends act like there is nothing wrong with him. When they call during a bad day and I explain what he is doing, they are like “Well, don’t all kids this age do that?” No, no they don’t. My son destroys property almost daily, has a room full of toys he never plays with, will only watch tv if I am sitting next toy I’m with him on top of me, but the moment I go to make a phone call or make dinner, all Hell breaks loose. But I guess, this has just become my normal. I am a working parent with a stressful job of teaching 8th grade English, then I come home and spend time making phone calls to doctors/insurance companies, try to keep my house in order, try to give attention to both my children, and barely have any energy left to give myself or my husband at the end of the day. These statements really resonate with me. Especially the ones made by well intentioned people about how God chose me to be his mother. I agree, but seriously… I want to say just stop talking or find something more productive and helpful to say!

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  • Russell Feuquay

    Don’t forget the siblings. We are in the same boat. Sure, it’s not the same as a parent. But then again the siblings easily loose out on things like a average childhood, being able to sleep over at friends house, being able to stay late for after school activities. The constant worrying. Hell, i’m 25 with grey hairs and have been able to take care of another human being fully on my own since i was 8 years old.

    Not saying i would trade it for anything in the world. But when i snap at you because you were being dumb, it’s because my mentally challenged 21 year old sister who has the brain compacity of a 5 year is smarter than you. I can’t tolerate idiocy. 😀

  • D. Elizabeth Hamlet

    “Accidentally bought the wrong kind of pretzels and had to pay $250.00 to replace living room window”.

    • Char Fox

      I know when it happens it’s NOT amusing. However, please forgive me for laughing hysterically. Just so matter of factly stated it tickled my funny bone.

      • D. Elizabeth Hamlet

        We HAVE to laugh at this stuff, because all the alternatives suck.

  • sez

    I get “but there is always someone worse off, ” all the time. Why do people think that, it does nothing to help, how can I find comfort knowing that people are suffering more than me? I have 2 disabled boys and know that there are people with bigger challenges than I have and all that does is make me sad.

  • Annetroy

    I found this today because I typed in I have nothing left to give my boys. I’m a disabled single mom of two boys the youngest has chronic lyme disease, aspergers and ADHD with severe mood swings and my oldest has odd and ADD. I have several chronic diseases IC,Fibro,DDD,ADD, and brain disorder. I am in a constant state of battling a breakdown again. I’m just in so much pain my soul is damaged so very badly since just a child and now my body as well. I am already dead in my head just waiting for someone to dig the hole for I have not the strength to dig it myself. I’m a ugly failure in every way all day all I here every minute is mom mom mom mom get get get need need need now now now and let’s not forget the I hate you or I wish I could kill you with a knife these things my autistic son says if he doesn’t get what he wants in a minute flat!!! The constant sibling hitting each other every every day at least once an hour mostly more. Tearing them apart always.. My soul is gone i just wish it would of taken my breath with it. Tomorrow will still come and I will walk dead around no family member caring for my mom was the one who stomp out most my soul as a child so the cycle go on and on and on.

    • Char Fox

      I don’t know if you believe in Jesus but if you ask, He will give you strength to keep going even when you feel it’s hopeless. Our kids don’t mean to be hurtful with their comments but they don’t know how to respond. Inside their minds can be churning and confused and they lash out. But they look to you to care for them even when they can’t express it. Love them in spite of it knowing that they struggle inside and don’t always understand what they’re saying or how it affects others. Keep in mind when he says these things that it’s only because of his inner issues and it’s not that he truly wishes these things.

  • Crmy Coco

    Hilarious and so true. It’s good to know I’m not the only one dealing with spontaneous meltdowns!

  • Kiki Love

    It is so exhausting. And then the best comments come from people who have no childre at all or no children with special needs (yes it is sarcasm). Where are our limits? Who is testing us? Am a single mother and my exhusband doe snot help but puts obstacles as he does not want me to re build my life.