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Top Ten Reasons Why I Hate Being a Special Needs Mother

Updated on February 20, 2012
Messier than a juicer with a Gremlin in it, louder than a sonic boom, and able to leap piles of toys in a single bound! It's Liam!
Messier than a juicer with a Gremlin in it, louder than a sonic boom, and able to leap piles of toys in a single bound! It's Liam! | Source

Okay, I promised myself I would never blog about it because this was supposed to be "me" time, my little escape from the world. I had a really bad weekend, though, and I need some place to vent my frustrations. Keep in mind these aren't about my son but about his condition and the extra burden placed on me as a parent. So here goes:

10. Having to use large, brightly colored cut-outs around my toilet, sink, and shower so that my son can differentiate between them all since they are normally white porcelain against a white wall. Bye-bye to my pretty spotted Ikea shower curtain and contrasting striped floor mats. Now it's bright orange behind the toilet, bright blue behind the sink, bright yellow for the curtain. It looks like a circus tent.

9. Spending two hours trying to figure out what is causing my son's violent tantrums and screaming fits only to discover it's because I was descaling the teapot and forgot to put it in the exact location on the back right burner of the stove.

8. Trying to figure out how to make a palatable meal for the rest of the family that involves similar or exact textures so that everyone will be happy and I won't have to cook three or four meals. Sometimes this gets so tiring and/or frustrating I just make them all separate meals and skip dinner myself - replacing my meal with a hot shower.

7. Not being able to have an adorable bedroom for my preschooler with all the cute little toys I see in pictures of other kids rooms. My son has two king-size mattresses on his floor, which take up almost all the space in his room, so that he can crawl underneath them when he needs to. He does, however, have a rocking horse in one corner, but that serves more as a diving board so that he can throw himself onto his mattresses. He also flies into rages and tears his room apart, ripping curtains off the walls and etc. This makes him more angry because of the disorganization and I end up cleaning his room five to seven times a day. Of course I make him help me, I'm not irresponsible.

6. Being forced to depend on my older son for help with my special needs child. My oldest is super-responsible, helpful, charming, wonderful, never complains, and takes on so much more responsibility than a child his age should have to. In fact, his teacher at school complained that he tended to boss the other children around and try to be like an "assistant" to her. I told her off and explained that he has a special needs sibling and he takes on those responsibilities out of necessity, not because he's bossy. I hate his second grade teacher.

5. Feeling so isolated. I know intellectually that I'm not the only mother who deals with a special needs child. That doesn't help to make me feel any stronger on a day-by-day basis. Those other mothers and support groups seem so far away when my son is wailing because the lights are too bright or the rain is too loud. He asked me just this weekend to turn the rain off because it hurt him. What am I supposed to say to that?!

4. Getting stared at by obnoxious, nosy parents. Yes, my son likes to lick the brick wall at his brother's school. Yep, he likes to stand at the top of the playground equipment, strip naked, throw his clothes, and then skid his naked ass down the metal slide all while I'm hollering and chasing him trying to get him dressed. Mm-hmm, my son likes to hide in the bushes when there are too many people around, or go underneath the cafeteria tables, or roll around in the mud like a puppy. I'm not a bad parent, lady, my child has a disorder!!! Go find something else to do. Isn't there a Starbucks on the corner? Sheesh.

3. Feeling like a failure. Yesterday I played with my son all day. We did activities that his behavioral therapist suggests for sensory integration play. Unfortunately, I forgot to bring him back down after each game we played - meaning that I had to "reset" his senses with breathing exercises. Because I'm such a loser mom and forgot that, by the time bedtime rolled around he was absolutely wild-eyed and enraged. He couldn't process the information that he'd experienced and was kicking, biting screaming, scratching, and crying. Instead of feeling bad for him I got really angry. I put him in his room, went into my room, stuck my face in my pillows and screamed as loud as I could. Then I put him in a cold shower, swaddled him like he was a baby, rocked him for about 30 minutes, then tried his bedtime routine again. Worked the second time. But it was all my fault that it didn't work the first time. I just feel like I have to be perfect constantly because every mistake I make has drastic results. Don't even get me started on the time I tried to rearrange the furniture in his room...

2. Not being able to spend enough time on myself. I know all moms go through this regardless of whether they have a special needs child or not, but this is a certain extreme that I never had with my older son. I used to wear nice clothes, do my hair every morning, never left the house without make-up. And this was all when my oldest was a baby! Now I consider dressing up to be changing out of my pyjamas. I have very long hair and the best I can do with it is brush it, then pin it up really fast. That's if I can FIND my brush. This morning it was in the utensil drawer next to the oven along with one of my husband's diabetic socks, a batman car, and two paper clips. I completely clean my house, every room top to bottom, at least three times a day. I used to vacuum five times a day until the cleaner finally broke. Between all that there really isn't much time for anything else. I sure would like to feel beautiful again though...

And the number one reason I hate being a special needs mom is:

1. Trying to figure out if his behavior and outbursts are the result of normal preschooler outbursts or whether they come from his disorder. The main problem here is that I can't discipline for something he can't control. He's just as confused about his disorder as I am. Maybe even more so. But I can and I should discipline him for outbursts that have nothing to do with his disorder. Sometimes telling the difference between the two is like trying to figure out what the hell Picasso was painting. (Yes, my hidden shame is that I am incapable of appreciating art.)

If you got this far, thanks for reading. And if you're a special needs parent then you probably know where I'm coming from. I adore my son, I hate his disorder. It's just that simple. I think tomorrow I'll write the Top Ten Reasons Why I Love My Special Needs Kid.

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    • jacqui2011 profile image

      jacqui2011 5 years ago from Leicester, United Kingdom

      I work in a local nursery as a nursery nurse and we have two or three children who have special needs. It is a lot of work as they seem to have more energy that the other children, and tend not to have naps in the afternoon. It must be very tough and tiring to deal with this 24/7. Is there not a nursery or friends and family who could give you a break in order to have some time to yourself to recharge your batteries? I really do sympathize with you. You are doing a great job under difficult situations. It's clear that you love your son, and it's the condition you hate. Best wishes.

    • profile image

      jenubouka 5 years ago

      This was wonderfully and truthfully composed. Your way or style of writing was witty and enlightening, though the subject is very challenging at times. You illustrate with your words the capability to require some off sense of humor which I think is vital and very just in the times of living with a special needs child.

      There are times where my toddler creates the same environment, messes, constant picking up, tantrums in the store and the stares of the other childless people who just don't get it. Then there are the other parents who allow their kids to run the joint like a wild pack of wolves, and this confuses my child...I think to myself, don't these parents know about child nappers?!

      I just loved this top ten list, and whether a parent has a special needs child or just battling the day where it comes down to tending to the children first, and that extra 10 minutes just to poop in silence is lost, I too, know how it fees, thank you for having the courage to write about it. Awesome.

    • larcaustin46 profile image

      larcaustin46 5 years ago from Austin, TX

      I'm a special needs mom, too, and I wish I could give you a huge hug right now--been there, done that. It is absolutely, utterly exhausting to deal with this and you are so wonderful for putting it into words and sharing it with those who have no idea what it's like. Maybe your readers will think twice the next time they see a mom or dad struggling with a child in a store or at church, and offer to help instead of glaring or silently castigating the parent.

      Have you consulted the administration at your school district about the availability of early childhood and special needs preschool programs in your area? If not, I urge you to do so--getting our child into the PPCD program in our school district was the beginning of her transformation from classic autistic to fairly typical, academically advanced fourth-grader with sensory issues, mild ADD, and lots of friends. She was last week's Student of the Week at her elementary school--something I could never imagined seven years ago when she was first diagnosed. Please check with your school district and those nearby who may accept transfer students to see if they have any offerings for your son. Best of luck--(((hugs)))

    • insidiousglamour profile image
      Author

      insidiousglamour 5 years ago from Bowge IX

      jacqui2011: The lack of naps is one of the most stressful because I don't have an hour or two to catch a breath in the middle of the day. I wish I had family here but my father lives in Texas and wants little to do with me and my mother is mentally ill and not a healthy person for my children to be around. I'm working with an organization here to get approval for respite care but there's a long waiting list. I hope I get through soon! Even one day a month would be nice!

    • insidiousglamour profile image
      Author

      insidiousglamour 5 years ago from Bowge IX

      larcaustin46: Its funny you mention the preschool programs. I'm currently in a battle with our area's ECAP program for special needs. I've been trying to set up an appointment with the school district for an evaluation, but somehow they keep forgetting to call me back and once they claim they lost my paperwork. There are many programs here, but our insurance requires referrals which our PCP is often loathe to give. Due to the limitations of our insurance I can't just get a second opinion and I can't switch PCPs without losing my insurance. Its such a mess! I almost wrote as a post-script that I hate all the advocating and ramming my head into brick walls! Thanks for the suggestion!

    • insidiousglamour profile image
      Author

      insidiousglamour 5 years ago from Bowge IX

      Thanks for reading Jen! Toddlers are difficult whether they have special needs or not. I remember when my older son was about 2 1/2 and I was grocery shopping. He begged to get out of the shopping cart and as soon as I let him down he ran through the isle knocking all the cereal boxes off the bottom shelf. I would vote for the next political candidate who promised a week's paid vacation each year for parents regardless of whether they work or stay at home lol.

    • Bruce A. Beaudet profile image

      Bruce A. Beaudet 5 years ago from Canada

      IG,

      Wow, a very powerful and refreshingly honest hub!I am going to vote up(I rarely do that). I can only imagine what your experience is like! I hope you have a good support network.

    • justateacher profile image

      LaDena Campbell 5 years ago from Somewhere Over The Rainbow - Near Oz...

      You are a great mom with a child with great issues. But I can read the love you have for him! I am a special ed teacher and am working with a little guy with fetal alcohol syndrome...this little guy talks or screams all day and cannot sit still for even five minutes. But at the end of the day, I get to go home and have a break from him...you can't do that and are still learning all the unique ways that you can help him...my thoughts and prayers are with you and your family! Keep up the good work! (and my little guy ran outside in front of the buses and pulled all of his clothes off yelling at the top of his lungs "see my peepee!" - not at all embarrassing! lol)

    • Nordy profile image

      Nordy 5 years ago from Canada

      My heart goes out to you and I applaud you for your honesty. I know others will benefit from you standing up and admitting to your frustrations. Great hub, look forward to reading more.

    • ananceleste profile image

      Anan Celeste 5 years ago from California

      My dear, I want to commend you for your honesty and openess. This are the things that only someone that is going trough the same thing would understan. And unfortunaly, too scared to talk about due to the constant judgement of others. I know. It seams like no one understands or care. I have 3 kids with emotional disabilities. they are teens now.

      Please find a support group in your area. I waited until I had a massive nervous breakdown. You are not alone. The lack of sleep alone sent me to the hospital twice. I love my babies, as you do yours. There is nothing embarrassing about feeling overwhelmed.

      This is my therapy too, it helps A LOT! I know that at the end of the day when you see him sleeping, you smile and it's all worth it. That's how I feel. Blessings my child.

    • insidiousglamour profile image
      Author

      insidiousglamour 5 years ago from Bowge IX

      Thank you ladies for your wonderfully supportive comments. Some days I feel like the worst mother in the world and other days I feel like Supermom. I know many mothers, regardless of whether they have a special needs child or not, feel the same way.

      anancleste: The end of the day is almost always the best part. Not because he's sleeping and its over finally, but because I can see him as he truly is, in his perfect and neutral state. I know he's sleeping well and having pleasant dreams and it really re-invigorates me to prepare for the next day.

    • profile image

      kelleyward 5 years ago

      Your words brought tears to my eyes. I feel for you and the difficulties you go through each and every day. You are not a loser mom but a mom with great difficulties to overcome daily. I'm glad you used this as an opportunity to vent some of your stresses. I cannot imagine the strength, courage, and love it takes for you to continue being there for your beautiful child. I hear what you said about the guilt you have asking your older child to help but I believe God planned a place for each child to be born and that although he will experience difficulties he will also reap many benefits and gain many strengths from his role in your family. Thanks for sharing part of your story.

    • profile image

      angi99 5 years ago

      OMG - we are living the exact same life - almost except that I have 2 boys exactly like that and there are days that all I want to do is run away and never come back. I stumbled on this when typing in "I hate being a special needs mom" and am very glad I stumbled on it. Maybe I can make it through the day now.....

    • Marcy Goodfleisch profile image

      Marcy Goodfleisch 5 years ago from Planet Earth

      Excellent hub - and so incredibly real-life. My compliments for expressing with real examples the frustrations and challenges of mothering a special child.

      Voted up, awesome and useful. And shared!

      This is so deserving of a HubNugget award! Congrats on the nomination, and welcome to the site!

    • TheInspiredLife profile image

      TheInspiredLife 5 years ago from North Carolina

      I can relate to so much of what you are going through! The only difference is my daughter looks normal, but cannot do a lot of the things other kids her age can do. She has disabilities that make her life harder than it should be, but it is not something you can look at her and see...so I get judged a lot from other parents who do not understand that she is not "normal" in terms of functioning and thought processes.

      I also have to deal with teachers who simply do not understand the disabilities she has. If she walks, talks and looks normal, they expect her to function and think like all of the other children, but she simply cannot.

      I agree that you need some type of support group...but I also know how hard it is just to make it to any type of group like that, and if you cannot make it without your children it doesn't do as much for you. It is so hard to take any time for yourself at all...and if you work it so you can, then you feel guilty. It is horrible.

    • Barbara Kay profile image

      Barbara Kay Badder 5 years ago from USA

      I'm sorry you need to deal with all this. You did an awesome job writing about it.

    • Daughter Of Maat profile image

      Melissa Flagg 5 years ago from Rural Central Florida

      This was a great hub. My husband works in a special needs school with pre-adolescent and teenage special needs kids. Most of them have violent behaviors, for example, one of them bangs his head against the wall constantly, and another can vomit at will. My husband says he has to restrain all of them several times during his shift. The work is physically draining, and now he has the biceps to prove it!

      I feel for both you and my husband, it can't be easy. My daughter has ADHD, but that's nothing compared to what you deal with on a daily basis. Her outbursts are maybe once a day. If I had to deal with the kind of stress you deal with, I would have written this hub too, although I'm afraid mine would not have been so loving!

      Great job, voted up and awesome.

    • Lenzy profile image

      Lenzy 5 years ago from Arlington, Texas

      Excellent article from a worn out mom. Thank you for sharing your heartfelt feelings of the frustrations that you sometimes feel. I'm sure there are other times when you would sing out the praises of all the things your special needs child has taught you. Hang in there. Lenzy

    • Amy Gillie profile image

      Amy Gillie 5 years ago from Indiana

      Thank you so much for writing this hub. Your honesty is refreshing and striking at the same time. Thank you for pouring your heart into this. I hope you receive a lot of positive comments on this hub. Be proud that you care enough to think through this, express it, and love your son no less. You get to be human too.

    • veggie-mom profile image

      veggie-mom 5 years ago

      Hugs, you are an amazing mom!

    • profile image

      saigita 5 years ago

      I really don't know how to start;All my best wishes with you. As a very good mother you sacrifices all. Your older one is a normal and nice, understanding,younger just opposite, just think once, God has given this special child to you because He may know how lovely and considering mother you are. This child need a special security from your lap.You used to give him your total

      as a holy mother. I am also a mother of one guy. I feel proud to know how condering mother you are?

    • Tams R profile image

      Tams R 5 years ago from Missouri

      As the mother of a special needs child, I completely understand.

      By the time my son was 5 I thought I would lose my mind and I sort of wanted to. Things are better now that he is 14, but those times are not forgotten. You are right, it is important to keep trying to figure out what is disorder related and what is in need of being disciplined.

      I allowed my child all sorts of liberties with the excuse he had a disability and due to the fear he may not live to be 5 years old that I am still trying to teach him discipline.

      I can tell you that you are not a terrible mom. Give yourself a break and realize what you would forgive of another mom in your shoes.

      Giant hugs to you! Don't forget to figure out how to get out of the house on your own for a couple hours at least once a month. It helped me immensely.

      Congrats on your nomination!

    • Ciel Clark profile image

      Ciel Clark 5 years ago from USA

      You are definitely not a "loser mom"

      You seem very cool and I love your writing style. My older son is a bit different, and although things are calmer now, there were some pillow-yelling times. Voted.

    • ripplemaker profile image

      Michelle Simtoco 5 years ago from Cebu, Philippines

      A lot of mothers with kids who has special needs can relate and would appreciate this very much. When it becomes challenging, one can one do? May I send you a loving hug instead? ((((hug))))

      Congratulations on your Hubnuggets nomination. To read and vote, head this way please https://hubpages.com/community/The-Good-the-Bad-an...

    • Catherine Kane profile image

      Catherine Kane 5 years ago

      Great hub.

      The one thing I would hope for you the most is to accept that no one's perfect, and you're not expected to be either. You're doing the best that you can for your child and good enough has to be good enough, or you'll burn out. Please don't beat yourself up or call yourself names like loser if you don't do everything "perfectly". It will not help and it'll suck the life out of you

    • Unleashed Freedom profile image

      Unleashed Freedom 5 years ago from star dust, planet Gaia.

      hugs. i could feel that you needed them as soon as started to read. it is hard. i don't have children. but ironically my father was a special needs father. so i sort of know where you come from. i hope you manage better as the days go by, even though it is hard. and somehow even though all the comments here don't help you deal with what takes place in your day to day life, i hope it helps a wee bit.

    • Cari Jean profile image

      Cari Jean 5 years ago from Bismarck, ND

      Have you checked with your state Department of Human Services - sometimes they have state funded programs where you can get trained individuals from organizations like Easter Seals to come into your home and care for your child sot that you can take a break, spend time w/ your husband or run errands. This has been invaluable for me and my husband who has a daughter w/ cerebral palsy.

      Also there is a great blog called Fighting Monsters w/ Rubber Swords that comes to mind when I read your words.

    • profile image

      Karen 5 years ago

      I so get every single one of these reasons. Bless you for putting this into words. I especially can relate to #2 and #3. It is hard. We love our kids - but these disorders....they are hard.

      PS-I hate your older child's 2nd grade teacher too!

    • profile image

      steph.wolfe@hotmail.com 5 years ago

      your Blog made me laugh and cry at the same time!! I have 2 special needs childeren 6 years apart. I totally feel your pain, thanks for posting this :-)

    • supermom_in_ny profile image

      supermom_in_ny 4 years ago from NY

      I know exactly how you feel! I am a mom to 7, my youngest is autistic. Life with a large, blended family is difficult enough. When you add autism, it is insane. Voted up and awesome, because that what you are! I'm following YOU. Be blessed! ;)

    • BzzyKaz profile image

      BzzyKaz 4 years ago from New York

      So well written! I remember days exactly like these! My special-needs daughter is now 21, so our challenges are different these days, but I was nodding my head as I read along. Keep on doing what you do, it sounds like you are doing just fine!

    • TripleAMom profile image

      TripleAMom 4 years ago from Florida

      You know, my kids are not special needs, but sometimes I feel like the worst mother. I have a 15, 12, and 6 year old, and learning to parent at different stages can be quite difficult. When my son entered his teen years, I thought I was going to go crazy. He entered the, "I know everything and you know nothing phase" and I went to my room crying with the "What did I do wrong" feeling. I don't know the difficulty of days on end dealing with what you go through though, but I am a therapist and work with parents and children. I do wish other people would understand what is behind situations that are occurring in public with children and not be so judgmental. I feel there is a light at the end of the tunnel for you, especially if you can finally get the preschool ESE program or some similar assistance. Bless your son for his maturity.

    • mom4autism profile image

      Lisa 4 years ago from Northeast U.S.

      OMG I am so glad I found this blog!!! FINALLY - validation for what I feel too. I just said last night - I know it could be worse but too bad I need to have a 5 minute pity party for myself! My son is on the Autism Spectrum and I can so relate to your blog. He also has many sensory issue and is also diagnosed with Clinical Anxiety! We can spend 45 minutes a day on socks and why he only wants one particular pair. You sound like a fantastic mother who deeply cares about your son and his needs. The fact that others stare is a part of life. I chalk it up to ignorance. Sometimes I just want to wear a shirt that announces it so that people will go on their merry way. But, then I just laugh and I stare right back and sometimes I actually say - please do not stare at my child, he has Autism!!! He does not like it when people stare. Thank you, thank you, thank you for brightening my day! Awesome, sharing and voting up!

    • Expressionista profile image

      Expressionista 4 years ago from Iowa

      When I decided to start writing hubs, my objective was to use this as therapy and stress relief. I can imagine how awesome it felt to get all those emotions out in the open. I was a little taken aback by the hub title so I HAD to read it. Glad I did because I can relate to just about everything you said.

      With both of my boys (both on the autism spectrum), it is extremely difficult to separate the disorder from misbehaving. I gave in a lot with my first one but eventually developed stronger boundaries. I cried myself to sleep many times and cried while I was disciplining him (of course without him seeing it). When my son would do things like thrash his room...drapes down, dresser drawers pulled out, clothes strewn about, bed ripped apart, wall hangings on the floor, and even taking the time to pull stuff out from under his bed, one of my parenting tactics was to ignore it, let him do what he needed to do and when he was done we would talk about it. There were also the screaming tantrums where I put him in his room and held the door closed until he was done throwing a fit. That was probably the most difficult for me and it felt so wrong. It felt like I was throwing in the towel and being hateful. But it would work. He would definitely try to get out but I held the door closed (I think the longest time was maybe 15 to 20 min) and cried the whole time. When he was done, he was a totally different little boy. He was calm and ready to sit in mom's lap and relax.

      I had forgotten all about having to do this to him until I had to do it for the first time with my 3 yr old. I didn't cry because I knew how well it worked for my first son. It was still hard but it worked. He was calm and then ready to lay down and take a nap without a fight.

      Thank you for such an honest and transparent hub. We should all take notes and definitely applaud you for your candidness. I hope you've had some luck with the school system deal. I pray for many, many blessings your way...

    • thewritingowl profile image

      Mary Kelly Godley 4 years ago from Ireland

      Well said again, I did a lot of head nodding while reading this article..oh yes I know...the luxury of time to do something totally selfish like have a facial or maybe just a bath! I hear you.

    • tfahad profile image

      Fahad Tariq 4 years ago from Illinois

      You ladies are horrible.....

    • profile image

      elsiebeth 3 years ago

      My daughter has autism. She is an adult now at age 33 and lives successfully with autism. She has a job, friends, many many friends some have disabilities some do not. Each year it got easier to handle her disability as she grew and learned to care for herself. So hang in there and enjoy the childhood period.

    • profile image

      Jane 2 years ago

      Thank you for writing this. My daughter has special needs too (she had a stroke at birth) and although some of her behaviors are different, I can totally relate to everything you said. Especially the part about not knowing what behaviors stem from his condition and what behaviors may be due to just typical tantrums. I also worry that if I discipline my child for something she truly can't control, that would be cruel. But I just wanted to say you seem like an amazing mother and human being. You go through things daily that most people could never deal with. And you do it with love, determination, and even a bit of humor. You're doing a great job. I've heard special needs kids get a bit easier too as they age. I hope they are right

    • profile image

      Tiffany 18 months ago

      Amen. This article is a godsend. I am so miserable being the parent of a 7 year old autistic/adhd boy. Sitting in therapy five days a week, tantruming, sleepless nights, and toilet training. I feel better knowing I'm not the only parent who feels this way. Parenting would not be so bad if not for his disability. God had a sick sense of humor. Thank you for this article

    • aidensdada profile image

      aidensdada 15 months ago

      This is a great article. I can feel for you. I'm a stay at home dad with a now 8 year old son who was born 4 mos premature, a 3 year old daughter with spina bifida and a 15 year old son with aspburgers syndrome (mild autism) and a lazy 20 year old son. I've definitely been dealt a full house. You should check out some of my hubs, I agree it is a good outlet.

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