Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Our Land – Am I a Special Needs Parent?

When I first found Sarah Almond, her blog name intimidated me. I figured she was way too smart to enjoy the drivels of me. I mean, come on. The Sadder but Wiser Girl? Whoa. Sadder AND Wiser? I felt like she had secrets to the universe that I didn’t. And, well, now that I know her better, I know that she does, in fact, have secrets to the universe, is married to an evil genius, and a whole bunch of other stuff about her and her family. I’m so glad that I do.  Sarah is not only brilliant, but she’s an amazing mom, blogger extraordinaire, and a cool woman all around. She’s got the most unique way of thinking, the best post titles and, well. She will surprise you, over and over. In the very best of ways.

Take her Our Land contribution, for example. She doesn’t often share what she’s sharing here. I won’t muck up her wonderfulness by saying anything else but welcome, Sarah, my friend, to today’s Our Land. And thank you.

Oh. Also, she has a thing about cats. And you know. Cats think they own the world and stuff.

Am I A Special Needs Parent?
by Sarah Almond

Being a parent is certainly the biggest joy of my life, but it also brings me the greatest worry.

I have been thinking quite a bit about a recent incident with my eight and a half year old son.  I had to take away his reading light.  He wasn’t staying up too late reading, or abusing his reading privileges, or anything like that.  He was literally in danger.  Most of the time when I write, it is humorous.  There is nothing humorous about what I am about to say.  I am not joking.

He had gone to bed as he usually does that night.  Every night, we let him read for about a half hour after bedtime. He knows that his light needs to be off no later than that, though occasionally he loses track of time and his mother doesn’t check on him for a while. That night though, I happened to be going by his room fairly soon after he had told all of us good night, and saw a light moving around all over the place on the walls.

“What are you doing?”  I called to him.

“Reading!” He hollered back.

Uh-huh, that obviously wasn’t the whole story.  I walked on into his room to see him waving his clip light by the cord up in his loft.

“Why are you waving your light around?”  I asked incredulously.

“Because it’s unclipped.” he replied.

“So clip it.”  I tell him.

“I don’t know how,” was his response.

Really? This is the kid who knows more about how complex machines work than most adults, yet he can’t clip a light back on.  So I climbed up into his loft to show him.  I am so glad I did.

If you read my blog, you are most likely aware that my son has some issues.  I mean, don’t we all?  He is ADD and has some behavior issues, as well as some things going on that we may never get diagnosed or fully understand.  One thing that has gotten to the point where it is more than just annoying is his oral fixation.  The kid chews on everything, from pillows to blankets to toys to library books.  He has ruined many shirts by chewing holes in the sleeves or in the chest.  Each year, we have to buy him multiple pairs of gloves because he chews holes in the fingers of them.  On more than one occasion, I have heard his little sister say to him “You can play with my stuffed animal, but please please PLEASE don’t chew on it!”

This particular evening, he had chewed almost completely through the cord on his light.  Yes, THE CORD!  The thing that electricity flows through!

I flipped out.

I spent a very long time trying to get him to understand why that was dangerous, and why he should never do it.  I know I raised my voice, I know I was on the verge of tears.  He looked at me blankly, nodding but at the same time looking like I was speaking some foreign language to him.  Then I took his light away, which upset him.  I felt so bad about it, because this is his thing, reading at night. But it had to be done.  He can read with the overhead light, and then turn it off when it’s time for bed. That’s fair, right?

My husband saw me walking out of his room with the light in my hand.  He gave me a quizzical look. I explained to him what had just happened.  He sighed, and bellowed for our son to come talk to him.  My son appeared quickly.  My husband then fired off several questions in rapid succession, to which my son answered with lightning speed:  “What is this?” “A cord.”  “What flows through this?”  “Electricity.”  “What happens when you come into contact with electricity?”  “You get electrocuted.”  “What happens when you get electrocuted?”  “You die.”  After a brief, but very clear discussion, he sent our son back to his room.

I am still not sure whether our son was able to apply that information to himself, or not.

This is one of those areas in which he can talk the talk but doesn’t walk the walk.  When he hits kids at school, he can tell you exactly what happened and why that isn’t ok, but it is like he is a spectator, rather than involved in the incident.  He doesn’t get that this applies to him.  This, too, was like that.  Just like when other kids don’t follow the rules and he thinks he is solving the problem, and breaks the rules himself.  Just like he doesn’t understand that all adults aren’t his friends.  He would literally go off anywhere with any adult or older child.  Yet, he is terrified of the house catching fire, or a tornado in the middle of the night, and sometimes doesn’t sleep because he’s worrying about those very things.

I worry about him all the time.

I worry about him getting teased and having no friends because of his behaviors.  I worry about him saying the wrong thing to the wrong kid and getting beat up, because he speaks whatever is in his head.  I worry about if he’s going to die when he gets his driver’s license because he’ll be so distracted.  I worry about him not finishing school because, although he has all of those brains in his head, he can’t focus enough to take a test.

Although he is gifted intellectually, he has some special needs.  His brain functions on another plane entirely from other people.  His issues are mainly social, from his tantrums and frustration to his lashing out at others, to his inability to relate to other children his age.  Thank goodness for his IEP, thank goodness for the teacher who he reports to multiple times a day for his behavior.  But, because I have anxiety, and ADD, and some other issues that I don’t fully understand about myself, I worry about what the heck will happen when they decide that he’s no longer on a behavior plan.  What happens when they turn him loose and he is left to deal with life at school on his own?

At home, we have spent years working on him being independent, on how to deal with things that don’t go just his way, on how to be tolerant and patient, on how to deal with spontaneity. Many of these things have now carried over into his plan at school.  Life is so much better than it was that first year of kindergarten when I spent the better part of the year trying to get him evaluated.  It wasn’t fair that he spent most of his time in the office.

I realize that I have not had to endure the stuff that so many parents of special needs children go through.  He has always slept well, he communicates well, for the most part the “H” is almost absent from his diagnosis.  Yet there is much that I deal with every day that I don’t necessarily share with many people.  The constant chewing on everything, the sensory issues, his questioning of every single thing, the arguing, the food aversions, his negativity, and the list goes on and on. He is a delightful child in so many ways, but I spend many evenings absolutely exhausted from dealing with him.

While I am the parent of a child that has special needs, am I really considered a special needs parent? How does one deserve the title? What does one need to endure on an hourly, daily, weekly, or monthly basis?  I wrote this partially as a way to put my feelings down on paper, but also because I’m curious.  What do other moms who have children who are high functioning but not necessarily “normal” children do?

Um. Moms? Can you help me out here? Because I don’t know. I’d like to know, and Sarah would like to know. Plus, I told you that she’s amazing. Here’s a bit more about her:

Sarah Almond is a freelance writer and blogger living amongst the cornfields in Iowa.  She has two exceptional children and one husband who isn’t too shabby either.  You can find her randomness about motherhood, ADD, Anxiety, and shiny objects that distract her at The Sadder But Wiser Girl.


  • [email protected] - In an entirely unprecedented move, you have made me love you more.

    No wide-eyed, eager,
    Wholesome innocent Sunday school teacher for me.
    That kinda girl spins webs no spider ever–
    Listen, boy–
    A girl who trades on all that purity
    Merely wants to trade my independence for her security.August 21, 2013 – 10:24 amReplyCancel

  • that cynking feeling - You know how some parents worry about putting a label on their kids by announcing a diagnosis? Because they don’t want their children to be pigeonholed? Because they don’t want people to make assumptions? Because they say, “my child is more than a label?” I guess we should consider “special needs parent” to be a label. The phrase explains some things, but not everything. No too “special needs parents” are alike. We are more than that label could ever tell another person.
    If you want to call yourself that, then embrace it. If you don’t, that’s okay, too.August 21, 2013 – 10:29 amReplyCancel

  • donofalltrades - Sarah,

    It was great learning a little bit more about your awesome family outside of the usual content you share.

    We all worry about our kids and how they’ll be treated in school and whether or not life is going to smash their sweet dispositions right out of their little bodies. I’m sure your boy will be fine. He’s so bright, he just needs to find a friend or place that can keep up with him!

    I worry about whether or not my own boys have some sort of issues. I’m pretty sure the 2 year old is just an asshole by nature, but the 4 year old sounds a little bit like your son. He’s so sweet and he has little quirks like twirling his hair and not eating almost anything at all that drive us bonkers. We’ll see.

    Good luck!

    I think you’re great, for what it’s worth! Ninee, you’re sort of ok too.

    DonAugust 21, 2013 – 10:34 amReplyCancel

  • Janine Huldie - How could I love you anymore Sarah? This was such a very open and honest post. God how I thank you for sharing with us. Believe me I think all kids have certain issues and as a former teacher I did see the gamete. And I am sure with my kids I will have a few worries and concern, too. Trust me I did when Emma was younger and not speaking as fast as I thought she should. Now I can’t shut her up, but the point is you aren’t alone and yes i may not technically be a special needs parent, but believe me I have my moments where I wonder why my kids did something, too.August 21, 2013 – 10:53 amReplyCancel

  • Jessica - Another awesome “Our Land” post! Sarah, so many of the characteristics you describe in this post about your son describe my 4-year-old, as well (only, he is minus the chewing and plus the H). Obviously, I have yet to see how that pans out beyond preschool and when he’s older. I totally understand your worrying about his safety (I would have FLIPPED about the electrical cord!) and I hope he’s able to keep his IEP and behavior program until he’s really ready to be on his own without them. Best of luck to you, looking forward to reading more of your posts (both of you, Kristy and Sarah)! 🙂August 21, 2013 – 11:24 amReplyCancel

  • Stephanie @ Mommy, for Real. - Sarah, thanks so much for sharing this so honestly with us. I am so sorry you had to experience something so scary. I hope you find some connections after writing this piece, and some moms who have been there are able to help you. I worry about my oldest daughter’s sensitivity and anxiety sometimes. I had to take her to the doctor the other day, and I thought her head was going to start spinning around she was freaking out so much. Screaming at me, going rigid, trying to hit me… I worry about what will happen if she gets scared and school and loses it in front of everybody. This post was so perfect for Kristi’s series- thank you so much for being part of it!August 21, 2013 – 11:26 amReplyCancel

  • Rachel - You have written such a beautifully open and honest piece, Sarah. Your love for your son is so evident in it. Thank you for sharing your mind here. I am honored to have read about this part of your life!August 21, 2013 – 12:01 pmReplyCancel

  • Karen - thank you so much for sharing…Dino had some speech issues when he was younger and has sensory (proprioceptive issues) that may or may not effect him when he goes to school. I worry all the time if he will fit in or stand out. Will his impulses and inability to realize how strong he is hugging someone will make him “the bad kid” or will he be able to control his body. So many parents and kids can be just mean…what if they bully Dino.

    As a special education teacher and reading specialist…and a mom…I feel the worry all around me.

    Thank you for sharing, thank you for being honest about your son and your worries. I look to moms who have older kids as my resources.August 21, 2013 – 2:08 pmReplyCancel

  • Kari - I haven’t written about yet on my site (not sure if I’ll ever get around to it), but my oldest son (now 16) has what we refer to in our house as Asperger’s Lite. That is, he is diagnosed, but is way, way, way down (or high up?) on the ‘spectrum’. VERY high-functioning and very teachable/trainable. If you met him today, you probably wouldn’t even notice or be able to tell he has Asperger’s.

    I forgot, how old is your son? I ask because for us the years between 2 and 12 (eesh! as I typed that …10 years!??? really, that long?) were the toughest. That blank stare you get when you lecture about something that seems to be SO logical–and you wonder if they are making the connection that what you’re saying directly applies to them.. YEP! I KNOW that stare! My son didn’t have the same issues you’re talking about, but I can relate to A LOT of what you’re saying. I think one reason I haven’t mentioned of any of this on my blog is that I feel like IN COMPARISON I have it pretty easy, having a kid on the spectrum. SO many other people have it so much worse– so I don’t know if I am a part of their “club” (<–I hope you know what I mean by that) Am I special needs mom? hmmm, yeah, I never knew either. I didn't/don't feel like it. I mean, years were difficult, but I got through them. He is doing AWESOME! Exceeding anyone's expectations… his teachers and resources teachers just cannot get over how much progress he has made. He is …essentially… .. (ack! I hate to use the word) "normal".

    Now, that said, I do still have my concerns/worries–all the time. I get a near panic attack thinking about him going off to college (in 2 years!!!).

    I have no idea if this is helpful at all, but I wanted to reply nonetheless and if you me, contact me if you have any questions or want me to expand on anything I've said here.

    This was a great post…weird that I am reading here first before reading on YOUR blog, but, that's how it happened this time. 🙂August 21, 2013 – 2:15 pmReplyCancel

  • Sarah Almond - Kari-You know what is funny? I have used that exact same phrase when describing my son’s behaviors! Thank you so much for sharing that with me!August 21, 2013 – 2:31 pmReplyCancel

  • Stephanie @ Life, Unexpectedly - Thank you for this great post! I still don’t understand how my calm and reasonable approaches never have the same effects as my hubby’s magic, maybe it’s daddys.. Thank you for sharing your doubts and worries, but I believe once he grows up and experiences more of the world, your son will do fine. Wishing all of you only the best!August 21, 2013 – 3:43 pmReplyCancel

  • Ariana - While my sons’ issues were far far less intense than your’s, I know that worry about the future. I trusted that he would adjust socially, he was able to have and keep friends, even though they would admit to me how he could make them uncomfortable. But his academic future was a constant source of worry. A worry I finally had to just let go. He is an adult, he works, and will go back to college at some point in the future. He was challenged all through school, we constantly heard “he’s so smart, why won’t he just do his work”. We supported him, kept him on an IEP, and finally the rest was up to him.

    I’ve written recently about my “special needs” sister, and the challenges my mother had.August 21, 2013 – 3:56 pmReplyCancel

  • Dana - I don’t have any answers for you, Sarah, but I hope other parents will. You write that life is so much better than it was in kindergarten, so I hope that things will continue to get better as your son grows and matures. You are pouring your heart and soul into nurturing and parenting your son – you deserve the title of awesome-dedicated-fabulous mom.August 21, 2013 – 4:06 pmReplyCancel

  • Lisa @ Golden Spoons - Sarah, thank you for sharing this with all of us. I, too, wish I had some words of wisdom or comfort to offer you, but I don’t. I think on some level all children have “issues” that we, as parents, struggle with. Obviously, some are more serious than others, but I think we are all “special needs’ parents on some level. The fact that you worry about your son so much shows how much you love and care about him. Again, thank you for sharing.August 21, 2013 – 4:24 pmReplyCancel

  • Menopausalmother - I wish I had an easy answer for you but sadly, I don’t. I’m glad though to see you opening up about this here and hopefully some of the other moms reading this can help. Love you to bits Sarah–always here for you. XOAugust 21, 2013 – 5:19 pmReplyCancel

  • Melissa - I think when your child needs special attention to regular life activities they are considered special needs. I think for every parent of a child with special needs (and not) there are areas where they excel or do not need accommodations, this is also where they can find their passion and self esteem. As a mother of a dyslexic child and one who is 3 with a language disorder, it’s hard to not worry, about IEPs about life after 18, about the day to day stuff. I think being aware and knowing your child is key to being able to prepare them (and yourself) for potential harm.

    Hugs go out to you, it’s not easy!

    I may snatch that badge over there, I like it!!August 21, 2013 – 5:40 pmReplyCancel

  • Mytwicebakedpotato - I loved this and at the same time it made my stomach hurt! I know your pain and worries because I have them too! I would have been hysterical about the cord. My highly-gifted son wouldn’t have understood either initially and that is terrifying.

    Kindergarten and first grade was terrible for us. The first grade teacher told us after six days of school that my son “took great pleasure in causing pain for others!”

    As you can imagine, I was horrified!!! That was not my son and what kind of person would say that about a 5 yrs old student after 6 days.

    Things are better now but I worry everyday. I know all parents worry, but I think of myself as a spec needs parent because I am worrying and planning and trying to assure the most success possible about basic things…tag less tshirts, eating enough food to be able to cope, and constantly modeling how to problem solve or talk to others.

    Thank you for sharing! 🙂August 21, 2013 – 6:42 pmReplyCancel

  • Tamara - What a brave and open post – and it doesn’t surprise me that Kristi loves you. I adore her. I don’t have any answers, unfortunately, and I am often surprised by what gets a diagnosis, and what doesn’t, and all that murky in between. I think if things ran the way they do when we were kids, my brother surely would have had many labels. I would have had physical therapy because I didn’t stand up to walk until I was 18 months.August 21, 2013 – 8:54 pmReplyCancel

  • Sarah Almond - Tracy-I was thinking about calling myself Sarian the Librarian for a work thing the other day. Get it? And then I realized that was ALSO from The Music Man-because I have had no brain for over two weeks now. Thank you for stopping by and leaving me some love!August 21, 2013 – 10:12 pmReplyCancel

  • Sarah Almond - To That Cynking Feeling. I think that it is hard for me to connect with parents of mainstream children because I feel like they don’t understand! While I hesitate to label my son because of him being pigeonholed, unfortunately he already has been in some ways. :-/ Thank you for your comment!August 21, 2013 – 10:18 pmReplyCancel

  • Sarah Almond - Don-I think you’re pretty swell too…August 21, 2013 – 10:20 pmReplyCancel

  • Sarah Almond - Janine-Thank you! It’s certainly human nature to worry about our kids and things that don’t seem to match up with what society expects-like when they start to talk, etc. Apparently I was slow to talk, and much like your daughter then my mother couldn’t shut me up. My son was late to talk also but his sister was an early talker. Most days I feel like I don’t get to say anything…August 21, 2013 – 10:24 pmReplyCancel

  • Sarah Almond - Jessica-It’s good to know I’m not alone-it’s also good to know that your son doesn’t do the chewing! It is getting better in some respects-I had him try gum, but he can only do that during the daytime and in the living room. He literally would go through 50 pieces of gum a day if I’d let him, so I had to ration it out! Thank you for your comment!August 21, 2013 – 10:30 pmReplyCancel

  • Sarah Almond - Stephanie-Anxiety in kids can be anxiety provoking for their parents, that is for sure! Thank you for commenting!August 21, 2013 – 10:33 pmReplyCancel

  • Sarah Almond - Rachel-Thank you! XO!August 21, 2013 – 10:42 pmReplyCancel

  • Sarah Almond - Karen-I didn’t realize that your son had sensory issues as well. Fortunately my son’s issues have gotten better with age. He still has certain food aversions and a few quirky things, but I know there are things that just a couple of years ago that he wouldn’t even touch (like play-doh) that he will actually work with now! Thank you for your comment!August 21, 2013 – 11:01 pmReplyCancel

  • Sarah Almond - Stephanie (from Life Unexpectedly, looks like I have more than one Stephanie hanging out with me today!)-In my house it’s because dad yells louder. Seriously though, he has a way of getting through to the kids that I don’t have. You’re right, it must be magic. Thank you for reading and commenting!August 21, 2013 – 11:21 pmReplyCancel

  • The Queen Mother - Kristi,

    Thank you for sharing this gift of a message with us readers. Unfortunately, I don’t have the answers to the questions Sarah posed. (Heck, I can’t even answer my own questions.) But as a mother who loves — and would do anything for — her son, I empathize.August 21, 2013 – 11:25 pmReplyCancel

  • SocialButterflyMom - I really appreciated the raw honesty in this post. Although my kid’s “normal,” I do see that he shares my short fuse when things don’t work properly. It’s frustrating to see, as it’s something I’ve never liked in myself, and now I’ve passed it on. 🙁August 22, 2013 – 4:12 pmReplyCancel

  • JenKehl - I love you Sarah. I know how you deal with these things every day. And I also know that you really never blog about it. You and I have many of the same issues, and I applaud you for being able to let go enough to let him attempt to have a normal life. I would be lying if I said that my son’s behaviors have not influenced my decision to homeschool. It is so hard when you know that the behaviors your child exhibits will not be tolerated by other children.
    And on another note, I jokingly call my son a pyromaniac, but it is not a joke. He did set our basement on fire and still to this day does not seem to get that he could have killed us ALL! It was that same blank stare.
    I also wrote a post once about not really knowing if I was a special needs mom. I think the truth is, if your child has special needs, as in needs that are different from your typical child, then they are special needs. Both your son and my son fit that description. You know I am always here for you!August 22, 2013 – 10:06 pmReplyCancel

  • Sarah Almond - Your kid and my kid: The blank stare masters. Whatever are we going to do with them? I say we get together and let them loose and see what happens when worlds collide…August 23, 2013 – 12:37 amReplyCancel

  • Sarah Almond - Thank you to everyone who read and made such wonderful comments! It’s nice to know how much support there is in the online community! 😀August 24, 2013 – 10:14 pmReplyCancel

  • Considerer - So sad I missed your appearance on Our Land in the week, and thanks for linking me in now. Incredible post – great job of writing and sharing it. I hope you get some of the answers you want, but I reckon you’ve found the right community here to offer the support and help and care to keep you going until you get them 🙂August 24, 2013 – 11:02 pmReplyCancel

  • Carol - Love Dexter - Wow. What an eyeopener. Electric cords… and yet, that makes so much sense. I love the Sadder But Wiser title, too… it’s perfect. Kids with special needs give lots of sad moments (and lots of love, lots!) and they teach us to be better and stronger and ‘wiser’. I’ve read a few of your posts, but it’s time I started dropping in on a more regular basis! 🙂August 25, 2013 – 7:12 amReplyCancel

  • Katia - I can so relate to the worrying, Sarah. I am an anxious person myself and worry is my brain’s default mode. I am so sorry that you spend so much of your time worrying and wish I could offer some advice. I am not sure what IEP stands for but have you tried consulting with the school’s (again can’t remember the proper term but) psychologist/educational advisor?August 25, 2013 – 7:31 pmReplyCancel

  • Out One Ear - I think it is normal to worry. But when we have a child with special needs, the worry never ends. At least in my case. And my daughter is 33. As far as labels, I think everyone should go with what feels right to them. Personally, I do like some labels. But maybe that is because my special girl never had an adequate one to meet her needs. I always felt that if we had a true diagnosis, teachers could better instruct her, I could help her better, etc. Anyway, I call myself a special needs parent. If it feels comfortable to you–go for it. If not, don’t. In my humble opinion, we (mothers) should embrace the fact that we are not all the same and may not feel comfortable with the same labels (or no labels, for that matter.) Fortunately, we live in the USA which gives us choices. And I’m comfortable with my choices.August 26, 2013 – 12:36 amReplyCancel

  • WhenCrazyMeetsExhaustion - Oh, Sarah 🙁 What I found interesting about this whole situation was how differently you and your husband handled it. I think hearing it from each of you, communicated in various ways, probably helps. You’re the more empathetic approach, and your husband is frank and to the point. Either way, you’re both doing your best and I give you two thumbs for that because parenting? It ain’t easy. Hang in there, Mama xoAugust 26, 2013 – 10:40 amReplyCancel

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