diagnosis

Diagnosis Stories: Mia and Sammy

We always wanted a girl. We had two beautiful boys already but something always felt incomplete. I mean I was a ballet dancer!  She was our only planned pregnancy and the day we found out we were expecting a daughter was definitely in my top 5 happiest moments ever.

My pregnancy was for the most part pretty run of the mill. We had a blast getting ready to take down the blue and red and put up the pink and purple. My older boys were super excited about having a little sister and the anticipation was unreal.

In August of 2009 we got to meet our little Mia. She was so gorgeous. The palest, silkiest skin imaginable, she looked like a little Snow White with her perfect rose colored lips. She had beautiful hazel eyes that we could stare at for hours. She was a perfectly “normal” baby. She slept through the night on time and met all of her milestones on time. No one could prepare us for the hail storm that was only around the corner.

Things were going along nice and calm for awhile until we were surprised to discover that we were expecting again. This time a little boy. Sammy. They are only 14 months apart.

Sammy joined our brood (commonly referred to as Team Walters) in October 2010 and was by all accounts another perfectly “normal” baby.

When Mia was about a year we started to notice that she wasn’t doing what all the other children were doing. She didn’t speak and had extreme and violent melt downs. She didn’t liked to be touched and would have horrific screaming “sessions” for hours on end in the middle of the night. She would strip off her clothes and refuse most of the time to wear anything (diaper included) at all. I would listen to my friends tell me about their littles with such jealousy and fear because my perfect little creature was not in any way shape or form close to functioning that well.

I started to research how to get her to sleep in a diaper and tried all the tricks, all the different styles of pj’s, zippers and buttons, clasps and even backwards diapers. Nothing worked and it seemed to only make her more upset. All the stories I would read a single word kept appearing over and over again. At this point it was only referred to among my friends and family as the “A” word. I wasn’t ready. I did however make her an appointment with her pediatrician. Who pretty much blew it off and labeled her as “developmentally delayed” and refused to even investigate the possibility of the “A” word.

This wasn’t good enough for me. It didn’t seem like the right call so I made a few myself and scheduled her a hearing test (which came back normal) and an evaluation with the early interventionists in my area. We had to wait only about a month but it felt like a year. Once the crew of specialists came and made their assessments, the “A” word became….Autism. High functioning with Sensory processing disorder (SPD). It felt like a ton of bricks had just been thrown onto my soul. My daughter? My only daughter? She is supposed to be “perfect” she is supposed to be a ballerina. What about her prom? What about her first date? Are these things all gone?

I was really angry for awhile. Then incredibly sad, but finally after a few weeks I put my big girl panties on and stapled my thick skin back together and started advocating for my daughter.

Within a few weeks she had started therapy. Occupational, Speech and Play (CBRS). Words cannot describe to you how much these women mean to me for reasons I will describe to you in a bit.

While all this is going on don’t forget we have little Sammy who in all honesty wasn’t getting my full attention emotionally (he wasn’t neglected or anything like that but it wasn’t until my world stopped spinning that I began to notice some irregularities). Sammy was just a little bit over one when we saw that he had stopped responding to sound completely. He was never a very social baby but now it appeared he only would make eye contact or interact with me. He wasn’t speaking or making any attempt at sound at all. He was hypnotized by one show and one show only. (The Backyardigans). Something was amiss and I was going to figure it out.

I took him to our pediatrician who tested his hearing and he failed that. No surprise there. So she referred us to an audiologist. We went through the sound booth testing and again no surprise he failed that too. Next stop to go have a BAER test (Brainstem audiotory evocation response test) to see the full extent of his hearing loss and be fitted for his hearing aids or maybe a cochlear implant.

My amazing husband had been trying to figure out a good way to tell me for a few weeks at this point that he thought there was something more going on with Sam. And, in his defense he did try a few times and I blew it off and said “No, No, No, it is his hearing, once we get him his hearing aids or cochlear implant everything will be fine. You’ll see”. As you can probably guess, it wasn’t. I did finally let him convince me to make the call that I had just made for Mia and get him evaluated also. The same group came out and tried to be as positive and upbeat as they could since they were indeed the folks who were just in my living room 6 weeks prior breaking down my vision of the future, but they had to be honest. Autism. Again. This time everyone jumped on my bandwagon and said “let’s see how it goes after he gets his hearing aids……..Maybe he isn’t as low on the spectrum as he presents.”

We finally went for the BAER test about 5 weeks later and his hearing was perfect. Absolutely no problems to report. You might think YEA! his hearing is fine that’s great news, but that is not how we took it. My thinking was that if it was his hearing then I could fix that. I have a compulsion to fix things but the problem lies within the brain. This is the Autism, I can’t “fix” that but I can help him.

So we delved into therapies, which wasn’t to much of an adjustment since Mia was already receiving them. Pretty much instantly Sam started Music therapy (Mia did too eventually), Occupational therapy, Speech therapy and then he also works with a certified speech and sign teacher. The dream team. Don’t underestimate the power of a spectacular group of therapists.

Fast forward to now. My hubby and I refused to let the Autism define us or our children and have started a war with it. We research and absorb everything we can. We are actively learning sign language and therapy techniques. We have even taught our older 2 to sign and they have embraced it. We are a signing home. We are in the process of making Sammy’s bedroom into a sensory room for both him and Mia to utilize. We currently have a fundraiser going to try to buy a therapy swing for Sammy. (link provided at the bottom if your interested to learn more). We have therapists in our home daily (most days more than one). Autism has made us better parents and made us understand why these children are called “Special” needs. Everyday they teach us something new and make us appreciate the smaller things like Sammy learning to clap his hands a few weeks ago or Mia actively showing compassion for someone else.

Here is what is going on with the kids as of today.

Mia is doing amazing. She has been using functional speech for about 3 months and can sign over 30 things. She understands more than 50 signs. She is on the GFCF diet and that was amazing for her behavior. She rarely becomes violent and can recover quickly when she becomes upset. She doesn’t have the night time fits that much anymore and has been wearing clothing consistently during the day. (the night is still a challenge for her but we will get there). Her therapists are rock-stars and have helped her so much. She now can tell me her needs, she knows her colors, shapes and about 75% of her alphabet. She has begun to try to pretend play which is amazing to watch. Just this past weekend we had a tea party. (I cried for an hour once it was over).

Sammy makes better eye contact with almost everyone. He is learning to play and has a few favorite toys that he consistently attends to for more than 1 minute at a time. He is trying to sign “more” (it looks like clapping now but WHATEVER) and the biggest change to report is that he now loves his dad. After a year of not letting my hubby barely look at never mind touch him he now goes to him for love, support, comfort and snuggles. He has the greatest “quirks” instead of using his hands to feel things he uses his feet. He makes elephant noises when he is happy and loves to clap his hands now that he has figured out how. He is de-sensitizing sound a lot slower now and will play peek-a-boo with me. 

Autism isn’t what I thought it was going to be (at least not yet). I know that my littles are going to face some major hurdles in their lives more so than “typical” children but I am ok with that. We will face them together.

Here is the fundraiser link if anyone is interested in helping! Once my littles are not able to use this swing anymore it will be donated to a family that needs it.

“Different, not less.” – Temple Grandin

diagnosis

Diagnosis Stories: In Their Own Words: Carrie

My earliest memory of spinning was at age 2 or 3 and I would spin for hours. It was my favorite activity for many years. I also toe walked, which worked out well for me when I took ballet classes as a teen. I also flap a lot and organize and eat my candies by color group. My family never expressed concern with any of that behavior, it was just accepted as part of who I am.

Socially, I have almost always felt like I was outside looking in. As a kid, I felt like I was weird, I was TOLD I was weird by some, but I was always friendly, even if I didn’t always say or do the right things. Knowing what to say is challenging, so I often just keep my mouth shut until I understand the dynamics of the group and the topic of conversation. I realized, early on, that if I say something, it needs to be something of value that pertains to the conversation.

In school, I had one friend that I stuck with every day. She was my constant during my school years and she remains a close friend.

I find family events and the like to be a bit exhausting. I really enjoyed going to my grandparents’ house as a child, which was the hub of all family activity, but it did wear me out. I was often outside with my brothers and cousins exploring the woods or visiting the horses. As an adult, I would go to my grandmother’s sewing room to hide while I nursed my babies. Other times, I would go find my grandfather and we’d talk at length about phonographs, the wax records for them, the petals on the horns, the years they were made, how they were made, Thomas Edison, machinery, Shirley Temple, and musicians like Louie Gillespie. He was a very calming person for me to be around, which was needed for me because my home life was very much the opposite. I treasure those moments because my need for order and quiet became a wonderful bonding experience with my grandfather.

When my oldest son was diagnosed in 2007, I started seeing Aspergers Syndrome in myself. I ignored it, mostly, just figuring I was weird or quirky. Over the last couple of years, however, I’ve come to realize that I am, indeed, an aspie, and that’s all there is to it.

I had asked my doctor in late 2010 to evaluate me for Aspergers, but she refused, and her assistant told me there is no test for AS. (I believe she misunderstood my question, as we’d been speaking of blood testing for other issues.) I let it go, at that point, and have come to the opinion that it doesn’t really matter whether I’m self diagnosed or not. It’s pretty obvious to anyone who spends time with me that I have Aspergers Syndrome. I’ve actually had people tell me, years later, “Yeah, I always thought that.”

I want other parents with Asperger’s Syndrome to know they aren’t alone and I want parents with kids with Asperger’s to know that their child CAN grow up and have a family, have a life, be successful, and be ok. I’ve had more than one person write me asking me for advice on how to approach a situation and telling me how grateful they are that I write what I do.

I feel like I’m the voice for the kids who haven’t found theirs yet, for the ones who can’t quite articulate what they’re going through.

Having my own blog http://parentingwithaspergers.blogspot.com/ and its own facebook page https://www.facebook.com/parentingwithaspergers has been instrumental in that.

Being able to connect on Bryan’s page https://www.facebook.com/pages/Asperger-Syndrome-Awareness/137166373065838 has been helping me to connect with more adults like me, and that helps me feel not so alone. I feel accepted now, part of a community that understands me and doesn’t expect me to change.

~ Carrie Anderson Cooling
Admin Asperger Syndrome Awareness
Owner Parenting with Asperger’s Syndrome

diagnosis

Diagnosis Stories: In Their Own Words: Sarah

Thank you, Sarah, for writing this for me. Her story is heartbreaking, beautiful and hopeful.

Okay, so my story is this. I’m a bit nervous about sharing all the details and how I got diagnosed but I think it should be fine.

When I was a child I was almost happy; however I needed speech therapy because nobody around me would understand what I was trying to say. I just spoke too fast. I can now talk normally–however if I am nervous or excited I still can sometimes talk too quickly, sometimes without realizing it. I can feel embarrassed when this happens. My mum was a child minder/baby sitter so for awhile I was being taught things at home with other children; however it was obvious to my mum, who already had a child and had experience dealing with children that I was a bit different than the rest. If she was to ask what the picture of an animal was–let’s say a cat–instead of saying cat, I would keep meowing instead. Sometimes I acted like a cat and when I would be asked to say what the animal was I wouldn’t say the word, even though I knew what the animal was. Luckily since we were all very young nobody picked on me and they would all try to help. I had a special interest in animals so when mum told others about what I was doing she got little exercises for us to do with animals and this did seem to help. At first, instead of watching cartoons, I would watch music and animal documentaries–which annoyed my sister at the time when she wanted to watch cartoons instead.

I did end up going to the Willow’s which is a special needs nursery in Portsmouth. I got assessed. Everybody could see I had something but none of them could pinpoint what that was so they all just kept trying different things to help. I did go to ‘normal’ primary school and I generally got on well there…I did get bullied; however, that did get dealt with, so even though I was upset when this started happening, I did not suffer from depression. I was still overall a happy child. I only had a few friends, as I always felt awkward around people. I still feel awkward around people but that’s usually only with very new people. My teachers for some reason did not want me to take SATS they said because I might get too anxious, but I told them I still wanted to do it and they let me. I can’t remember the grades I got but I think I did reasonably well.

I’ve always had special interests. When I was little, my first special interest was the song “I Will Always Love You” by Whitney. I think I was a baby, so most likely I did not understand the song and I don’t know why I loved it so much back then…It amused my family though–every time it came on I would stop whatever I was doing and keep my eyes on the screen. If I was talking I would stop. My parents even recorded it at one point and they would play it to stop me from crying whenever I got upset about something. It worked. They didn’t really think much of this obsession but my mum was a bit worried when I was into Pokémon because 10 years later I was still obsessed with it–however, she didn’t know anything about Asperger’s or autism in general so she did not suspect it. I also had a special interest with animals and I still love animals a lot now.

When I was in secondary school….I still had only a few friends but I was still mainly happy. I tried to focus on the positives instead of the negatives. Sometimes this was easier said than done. I went to St Edmund’s Catholic School, which is supposed to be a good school… I suppose education-wise it was…However, I got bullied a lot more in St Edmund’s and it never got dealt with, even when it was happening right in front of them. At first it was only stupid name-calling by people I never even talked to, so I managed to ignore it throughout the years, but this either started in Year 10 or Year 11…I think it was Year 11. Anyway, one of my friends just suddenly turned on me and started bullying me every day of my life there…She was very unpleasant…It did not help that I am extremely sensitive… Too sensitive in fact in my opinion…She already knew I was/am gay but then for no reason at all she started spreading it around the whole school and made other rumours about me…She also started saying behind my back that I was the ugliest girl in the whole school…To be perfectly honest I don’t think I’m overall bad but back then I had less confidence and this hurt me mainly because I believed this to be true…Also it wasn’t just her but my friends who were also friends with her also turned on me…I still don’t understand why because I was always friendly with them, but anyway, she at one point started hitting me physically and throwing rocks at me…She hid my stuff or would throw them around the classroom…Once she actually took my lunchbox and threw it into the pond so I actually had to starve the remainder of the day…When it got to that point I thought enough was enough and I went to the head of the year…She told me to write a letter and give it to her but she still did nothing about it in the end.

As if that wasn’t bad enough, I was also getting bullied by Mum’s boyfriend…I got bullied by him for the five years that he lived with us. When I first started getting bullied with him I could cope–I would get upset but I could cope with it…I went to school and that would give me a break from it, or sometimes if he went away on his boat, if I got picked on at school I would come home and have a break. So at first I wasn’t thinking too negatively, even though sometimes I would; after all, I am still human. I did feel I was different when I was in secondary school but I didn’t know why exactly. However in Year 11 I was getting bullied at home and school…I did sometimes suffer from depression… It was worse at home–I would be told by him that nobody is ever going to love me, which for a short while I actually believed…I was also being told that nobody cares what I think or what I have to say. I would also be told that I was useless, stupid things like that… He would also try to get my mum against me. I think sometimes she believed him at first, then realized he was lying…Sometimes she would know he was lying straight away. One day my mum’s boyfriend had hurt me emotionally so much–I can not remember what he actually said to me, but after he left I physically wanted to hurt myself…I didn’t, but I remember thinking, “One day I am going to go insane.” That’s how stressed-out I was. I’m not sure if they had stayed together longer if I would have done something to myself. I remember thinking I couldn’t take it anymore, but then soon after they broke up and I didn’t have to deal with this anymore.

I would like to say that although I did not like St Edmund’s towards the end, I was sometimes happy in Year 11. I had a friend called Maria who I would talk to after school and our conversations always made me feel better…Sometimes she made me feel so much better about the whole situation at school that I would laugh. Even if sometimes she wasn’t making jokes, just talking to her when I was upset would cheer me up. We are still friends now and she remains to be an important person in my life–regardless of what happens in my life she always will be. Despite not always having good luck with friends at school, some of the people I knew outside school (a few from when I was) were brilliant. I can’t list all their names but I appreciate each and every one of them. My sister is also brilliant and talking to her would usually make me feel better about things. I consider her to be one of my best friends.

Oh yes, I forgot to mention that throughout my school life I had an education psychiatrist and a few other people…They knew I had something but they did not know what I actually had. They tried helping me and it would help a little. I guess I always tried hard and I always managed to reach the targets. The school did not want me to take GCSE’s; however I knew how important they were, and so I told them I wanted to do it, and they had no choice but to let me. I got decent grades; however, I think I would have gotten even higher if I actually had the right help in school.

College…I liked animal care better than secondary school but I still had some problems…My first year in animal care wasn’t too bad–though people would have disagreements, I usually managed to stay out of any trouble. I had started being a little more careful when I was in college. After my last year in school I was nervous about meeting others. My second year in college, I did have a few falling-outs but I was careful on how I approached things–I gave them space and just let them come to me when they were ready. However, I did feel lonely at one point since everybody was friends with this person everybody was always around them…So I was often alone until we became friends again. I didn’t get much help in college, but I did very well still–in fact I would always get one of the highest grades out of the whole classroom. Nobody really suspected that I had autism. You’re probably wondering how on earth I got diagnosed. I’m nearly there….

When I did Childcare at college…This is when everything went downhill for me…I had just had a breakup and I probably should not have sent myself to college, but my mum wanted me to go, and I didn’t really have the energy to argue with her about it…I was upset but sometimes I could deal with it…Anyway, the year had already started, so people were already in their own little groups, and I had to work extra hard to fit in and actually make any friends. I’m a nervous and shy person so this was really difficult for me…I was more nervous than I usually would be because, as my luck would have it, the same person that made my last year in school a living hell…Was in my same classroom! She was also friends with what appeared to be everybody… Just so you know, nobody in my family knew I had a breakup so they did not know I was in any sort of emotional pain. I was hiding it a lot of the time and just pretending to be happy when I wasn’t. I would have talked to my sister about it, but as it just happens she also had a breakup at that moment. I thought that was the last thing she needed, so I didn’t mention it to her at all…I would hate this but the girls that were in my class seemed to be obsessed with talking about boys and their relationships…They would talk about it for hours, every single day, and I had to listen to that every day of my college life, which would then just make me think too much…At one point they had even asked me if I was with someone. I didn’t give them a whole story because I knew I couldn’t with people I’ve only met, nor did I want to, but I said I just had a breakup…In a way I had hoped this would have made them stop and they would talk about something else… That is something I would have done…But no, they kept doing it regardless. Months went by, and despite trying to act normal and make some friends…It never happened. I usually ended up by myself which made me feel lonely and I was slowly becoming depressed. At one point outside college I met a guy called Paul…I felt oddly happy with him and we got along well…It would most of the time make me forget about my problems. I felt really happy when we were texting as well, and we would actually text each other a lot, so even though I was still by myself in college, at times I wasn’t overly depressed anymore…We dated at one point it didn’t last overly long…It was simply too soon for me. But I knew I had hurt him, which led to me feeling guilty, so I was back to being sad a lot of the time and again just kept it to myself…And no, I didn’t date him to fit in or whatever. I genuinely liked him, but it was beginning to hurt me more that I was seeing somebody else…I started having what felt like a lot of disagreements with my mum, which also stressed me out…

And then one day I suffered from a psychosis episode…I had probably been developing it for the last few months that I had been at college, but nobody (at least in real life) knew enough about mental illness and nobody really knew I was mentally ill until one day I just completely…snapped. I don’t remember a lot of it, truth be told, and I don’t think I want to remember the exact details. Everything was a complete muddle for me and I was confused even by basic things. My emotions became unpredictable…Everything I said probably didn’t make much sense…I remember at one point I tried to talk to somebody about it, but I wasn’t really in the right state to so it didn’t make sense…I remember I saw a counselor, but I kept talking about different things that had happened in my life that I got stressed about…I probably remember this because I then got told that I’m too intelligent for my own good…I was shocked by this. I’d say I’m about average but really, too smart for my own good? Above average intelligent? I doubted it and I still doubt it to this day. I didn’t physically hurt people but I said things that hurt others…To be honest, looking back, a lot of it wasn’t even what I would normally think. In fact, usually I would have thought the opposite…My mind was a mixture of films that I somehow memorized years ago, like 300 and what other people have told me…Lord knows why I even still remembered it because it would be things from years ago, not things that had happened recently…Like one person told me once that they believe religious people are just brainwashed…I had in my head muddled it up to people being brainwashed in the world. I believe I said something about 9/11 because we were taught about it in Citizenship in school, and other people would talk about theories….I saw things from horror films…Some people online probably thought I was trolling, but I was actually scared…

Anyway, despite what people generally believe of mentally ill people, I was actually more of a danger to myself than others and I never once physically attacked somebody, nor did I want to. I did go to hospital for a few months, and when I was asked if I wanted to go back to childcare, I said no. I think at the time that was the best choice for me. When I actually realized I was sick I thought I was going to be this way for the rest of my life, but no, that’s not actually true. In less than a year I got better and was back to my normal self…Heck, I’m even better now before I was even poorly! I’m stronger, wiser, and I’m more positive than I was to begin with. People usually take longer to get better. I’m still on medication but on a very low dose and I may be coming off it soon. I now do voluntary work at a pet shop. Sadly, I lost a few friends due to my sudden craziness as it were, but most people seemed to be understanding that I was sick, not myself and such, and forgave me. I almost lost somebody very important to me, but I sent them a message apologizing for everything…She needed time which I could understand but she still sent me a message every now and then to see how I was. We are friends again now and we’ve been fine with each other ever since. I’ve learnt how to deal with stress better now, so I doubt this will happen to me again…My favourite thing to do to help with my emotions is art. I always liked my art but after getting poorly it became a passion of mine. I now go to an art group and I try to socialize a little when I’m there as well…I tend not to tell people what I had gone through because I know a lot of people will suddenly be scared of me and I don’t want people to think I’m crazy or something, though I know most likely a few do think that.

You may be wondering why that was even relevant to how I got a diagnosed with Asperger’s…Well that’s how I got it truth be told. Sometimes I can’t believe I had to go through something like that to get diagnosed with Asperger’s, but that’s how it happened. My therapist read my notes and just instantly said to my mum “I’m going to assess her for Asperger’s.” So for the next couple of months she was assessing how I would do things while studying it more so she could diagnose me along with another professional, and yes, they did indeed conclude that I definitely have it. My mum kept doing research on it and we agreed that a lot of it sounded like me. Not all of it but a lot of things did. And life has generally been easier for me now that I’ve been diagnosed with it. Me and mum still have disagreements like normal people do, but she is generally more understanding than she was. I now go to a social group for people with Asperger’s, and while I am still shy around people there, I don’t feel as awkward as I usually would. I do tell people I have it and people seem to accept it. I haven’t really had many problems with that. To most people I’m still Sarah. One person had watched the Undateables recently and a person had Asperger’s on that show…That person on there obviously didn’t know I had it or if they did they didn’t stop to think how I would feel…They made some sort of sarcastic joke about them…I felt offended about it and since they didn’t apologize I simply took that person off my friends list. I hadn’t spoken to that person for ages anyway and I was hurt by it, but it was stupid and I believe I’m better off without people like that. Thankfully I no longer believe nobody is going to love me, and I do think one day I will find someone, but until then I’m going to enjoy single life. I am not going to listen to anybody who says otherwise just because of this condition. There are probably some people who have endured worse than I have…But I think I’ve still gone through a lot and without sounding big-headed I am a bit proud of myself and I have met so many wonderful new people who I probably never would have if I didn’t go through all this.

And if anybody wants to look at my artwork here is a link to where I post most of them http://thewolfgirl011.deviantart.com/

autism · diagnosis

Diagnosis Stories: David

Thank you, Kim for this amazing story. Please visit her blog:

The Simpson Six

In the Beginning: 
A lot of people have asked us if we’re prepared for Katie, as a special needs child.  We should start at the beginning.  Eight years ago this week, our first child David was born.  
Chris and I were clueless.  I was 26 and Chris was 31.  And Chris had never held a baby.  We bumbled through the first few months in dazed ignorance.  David was amazing – seven pounds, eight ounces of incredible baby bliss. He was the easiest baby.  He slept so well, ate like a champ, and never cried.  We went for walks, went to the library, and snuggled all day long.  I would hold him and tell him about all of the things he would do when he got bigger.  I would whisper in his ear how much I loved him while I rocked him and rubbed his back.  I would stare at him and trace his little eyes and nose, hoping to never forget how he looked, how he felt in my arms, how he smelled, how soft his skin was, and how much I loved being his mama.  For the first year our lives with David were perfect.  He was a healthy, perfect child.  
Three weeks after David turned one, Henry was born.  Obviously having a one year old and a one month old was difficult.  But really, we made it work.  David was interested in Henry, but really not much.  David pretty much stuck to himself.  At his one year check-up, I mentioned to the pediatrician that David wasn’t talking at all yet.  She wasn’t concerned.  And he was my first child – I really wasn’t that concerned either.  As we approached sweet Henry’s six month “birthday”, I noticed how much Henry was babbling.  It was such a sweet, bubbly sound.  And one that David never made.  Ever.  He never did any sort of “baby talk” or babbling, or even reacting to sounds.  I even wondered one day if he could hear me, because he almost never reacted if you were not right in front of him.  I remember one time clapping my hands really loudly behind him to see if he would startle.  (He did!)  
I brought David  back to the pediatrician, and she again said she wasn’t concerned that he still wasn’t talking.  She assured me that he would “talk when he was ready”, but I insisted on a speech evaluation.  Someone from Tennessee Early Intervention System (TEIS) came to our house and evaluated him.  We had a hearing test done, which he passed.  The TEIS evaluator remarked that David was “so smart”.  His results came back delayed, but not delayed enough to qualify for services.  I wasn’t OK with that, so we had a private evaluation done at Vanderbilt’s Bill Wilkerson Center.  He was diagnosed with apraxia of speech.  At eighteen months old, David had the expressive speech of a six month old; exactly the same as his infant brother Henry.  I researched everything I could about apraxia.  And none of it was good.  Everything I read talked about how difficult apraxia can be to overcome, how it can make learning more difficult, and how most children with apraxia require speech therapy into middle school.  I was determined that David would overcome his apraxia, and that he would speak like other children his age.  We started with sign language.  We had a food board and other visual aids to help with communication.  We went to speech therapy sometimes three times a week.  We practiced at home.  We enunciated everything with explicit expression.  
David turned two, and we brought cupcakes to his group speech therapy class the way people bring them to school.  I potty trained David on the little potties at Vanderbilt.  We knew the birthday of the woman at the front desk and which floors of the center had the best vending machines.  He had two surgeries to aid in his speech development.  
David turned three, and his speech therapist brought him a cupcake this time.  We kept going to speech, and we kept working hard.  And it worked. . . It WORKED!  Three years after he started, he was running ahead of me to the classroom and his speech therapist looked at me with tears in her eyes and said, “He’s done.”  I was confused – I had no idea what she meant.  She said it again.  And we walked out of that center shocked.  And so thankful.  It worked!  We were done!  David was “normal”.  But really, I think deep down I knew there was more.
Shortly before David’s fourth birthday, Jack was born.  We had Henry’s birthday party that year at Chuck E. Cheese’s.  And David spent most of it underneath the table.  David was also in his second year of preschool.  He loved school, and loved his teachers.  When I asked the teachers about his friends in the class, they would hesitate.  They said that he liked to read books and play around kids, but that he didn’t interact much with them.  They were quick to tell me that most kids that age did the same.  They also said that David would sit at the end of the table at lunch instead of sitting with everyone else.  I asked him about that. . . he said, “I don’t want to smell they food.”  He had a very sensitive gag reflex; if he even saw me feeding Jack baby food, David would throw up.  At preschool performances for Mother’s Day or Christmas, David would stand on the stage with his hands over his ears and his eyes shut.  For the entire. performance. 
David hated to have his hair cut.  He was an exceptionally picky eater because he couldn’t stand the consistency of certain foods.  He wouldn’t walk in the grass without shoes on.  The only child he really was ever interested in playing with when he was little was Henry.  Other than that, he would play around people; next to them, but never really with them.  He was incredibly smart.  As I type all of these things, I feel ridiculous.  How did we not see it?  Did we know it but not want to admit it?
When David started Kindergarten, he was so excited.  I was so nervous.  I was seriously going to drop my FIVE year old off with strangers for the entire day?  For five years I knew everything this boy did, when he did it, and who he did it with.  He was rarely out of my sight.  And I was just going to leave him there?  I remember parking the car on the first day and seeing him in the rearview mirror with his eyes wide and his backpack on the seat next to him.  He unbuckled from his booster seat and climbed out of the car.  I reached for his hand and he hesitantly slid his little cool hand into mine, then immediately pulled it out.  He said, “I love you, but I don’t want to hold your hand here, OK?”  We walked into the gym, where everyone waited before the classes were dismissed to their respective rooms.  And he lost. his. mind.  He was holding on to me, screaming and crying.  He had to be peeled off of me and physically carried to his class.  And not just for the first day. . . for the first three months.  Finally we realized it was the gym – he couldn’t be in the gym with all of the noise, all of the people, all of the sounds, and all of the smells.  I got to school later, so he would be able to go directly to his classroom, and all was well.  There have been many, many things like this with David – things that are too much, and we find ways to deal with them.  
David turned six and I knew first grade would be better.  His teacher was fabulous, and he was familiar with the school.  The first day was like Kindergarten all over again.  Quickly though we went back to arriving later and life was good.  Six weeks into the school year, we moved.  And had to switch schools.  I had a pit in my stomach thinking about how that would go.  It was a better transition than we expected, and his new teacher was equally amazing.  His papers started to come home with drawings on the back, and he had a hard time focusing in his classes.  His teacher told us how smart he was, and how easy the work was for him.  She said that all of the kids in the class liked David, but that his social skills were a little off.  He hated group work – because the work was too easy for him, but mostly because he wouldn’t be bothered to work with other children.  He wanted to work alone.  At home, his behavior started to become increasingly difficult.  He had lots of tantrums.  And I’m talking epic tantrums.  About seemingly nothing.  Tantrums that would last for an hour.  He would have a total meltdown if something tiny happened that he was unhappy with.  He would say cruel things to his brothers and have zero regard for how it made them feel.  He would fixate on one thing:  watching Star Wars, playing Cars, playing Legos, watching Indiana Jones, learning about the solar system.  And then he started some weird eye blinking.  I made an appointment with the eye doctor, and he needed glasses.  Problem solved.  Except it wasn’t.  He started a head shaking and shoulder shrugging.  I video taped him one day, and he told me it was a “deskercise”.  Um, I don’t think so.  
David turned seven during first grade.  He and Henry had a joint birthday party, and we had ponies.  David rode that pony for four hours.  The only time he got off was to blow out his candles.  He said, “When I was on that horse, my brain slowed down.”  I wanted to cry.
I made a doctor’s appointment for Henry and David.  Henry had a rash, and I wanted to talk to the doctor about the head shaking and shoulder shrugging.  I dragged them both in, and we met with a doctor I had never seen before.  He was really nice.  He looked at Henry’s rash and said it was excema.  We talked about David’s shoulder shrugs and head shakes.  I showed him the video.  I tried to make it sound like it wasn’t a big deal, because David and Henry were in the room.  He asked me some questions about David.  And by some I mean like three or four.  Not like forty.  And then he said, “David has Tourette’s Syndrome.  And I think he is autistic.”  What?  Um no.  Henry has a rash and David shrugs his shoulders.  He does not have Tourette’s Syndrome, and he most certainly is not autistic.  What the hell?  Shouldn’t it be a big deal when your kid is diagnosed with autism?  It shouldn’t be by some guy you’ve never met, with two of your kids in the room fighting over who gets to put the cochlea back in the 3-d model of the ear.  
We got a second opinion with one of the best pediatricians in town.  He agreed with the first one.  He referred us to an amazing pediatric neurologist.  He confirmed.  Tourette’s it is.  He referred us to the Kennedy Center at Vanderbilt for an autism evaluation.   They had a twelve month waiting list.  A freaking year.  Are you kidding me?  There was absolutely no way we would wait a year.  My child needed help NOW.  His behavior was becoming increasingly more challenging, and I was becoming increasingly more distraught.  Our neurologist sent us home with some surveys for us to fill out and for his teacher to fill out.  He referred us to a pediatric psychologist who did more evaluations.  And damn if David doesn’t have autism.  How did we live seven years with this child and not know?  How could I, his mother, not know?  How could he have been so evaluated and seen by so many medical and therapeutic professionals, and nobody knew?  
I was a wreck.  I couldn’t wait a year to get this child services, and I couldn’t get them at school because by the time we got our diagnosis, school was out.  So we called Ms. Dana.  I was in an absolute panic at that point.  At our first appointment, we knew it would all be OK.  Ms. Dana also diagnosed David with sensory processing disorder.  (Are you keeping count?  That’s four major medical diagnoses.  He was seven.)  Dana pointed out that nothing had changed – it just had a name.  Or three.  And she talked me off the ledge.  And she was right; nothing had changed.  So we replaced speech therapy with occupational therapy.  And we carried on.  We don’t talk about Autism with David.  Or Tourette’s Syndrome.  Or Sensory Processing Disorder.  He goes to speech, but because he has a slight lisp.  Not because of anything else.  And he knows he goes to “exercise class” with Ms. Dana, but he has no idea why or has never asked if he questions it.  And he is so much more than a diagnosis.
He is a mediocre baseball player.

A fish-like swimmer.

A champion Twister player.

A fast runner.

A master lego builder.

A Cub Scout.

An Oompa Loompa in the school play.

A voracious reader.  
And an enormous part of the reason we are willing and excited to adopt a child with Down syndrome. We never set out to be the parents of a special needs child.  Honestly, we never thought about that club until we were members.  But here we are.  Being David’s parents has changed us forever.  And, while we wouldn’t ever have asked for David to face the challenges he has faced, we wouldn’t change a single bit of it.  David has taught us to be more patient and more forgiving. He has taught us to be more tolerant and much less judgmental.  He has taught us that different isn’t scary.  He has taught us about unconditional love – that even in the midst of his worst tantrums or uncontrollable behavior, he is still the seven pounds, eight ounces of baby perfection.  He is smart, and witty, and insightful, and amazing.  And perfect, just the way he is.  
My life started when David was born.  And all of his challenges have made him, and me, better.   Everyday, I want to be a better person for David, Henry, and Jack; but David started it all.  David has taught us that life is hard, really hard sometimes, but that when you get through the hard, the other side is more beautiful than we could imagine.  I will be thankful to David forever for the lessons that he teaches me.  And I will forever be thankful to David for bringing me to Katie, for if we had not known that we could parent David – a special needs child – we would never have considered adopting a child with Down syndrome.  David has not just changed our lives, he has changed the life of a sister 6,000 miles away.
autism · diagnosis

Diagnosis Stories: Jaron

(For those of you who know my story, you know that the Smith family played an integral part in us getting Casey diagnosed. Their son is 5 years older than Casey. They got us through the denial, the diagnoses and the aftermath. They had gone before and helped us along our way. This is their story:)

From Tammy (Mom): 
 It started at his delivery. He was term, but my blood pressure was off the charts. They induced very calmly and it was a boy!!!????!! No, they told me every ultrasound it was a girl. I WASHED the pink clothes. “Are they sure?” Yup, they were sure!!!!

  Then at his baby blessing. He was blessed the same day Miranda (8 yo) was confirmed {in the LDS Church, children are given a blessing shortly after birth then baptized and given a blessing, or confirmed, where they receive the Holy Ghost at 8 years old}. She waited 2 months to be baptized so the blessing could be the same day (as her supposed sister oops!) Anyway, we had a ton of family in town.  Deron confirmed Miranda first, beautiful (normal, as it were). Regular stuff, married in the temple an example to her brothers etc… (good job sweetie!!!!!!) then he came and got Jaron from me.

Jaron’s blessing started out fine, but it was different. A lot of pausing and the blessing itself was not very long. What the HECK? Nothing about mission or marriage or anything…. Hmmmmmmmm? Strange…? I let it go and didn’t say much about it. He’d been very emotional as well.

 Three days later Jaron started throwing up a lot. I luckily got into our pediatrician, but by that time there was blood. We got there and the doctor was sooooooooo calm, but moved really quickly. He stepped out of the room for a minute then came back and told me he had called an ambulance. WHAT? His heart rate was over 300 beats per minute he had SVT (supra ventricular tachycardia). Luckily Deron had come home to watch the kids for the doctors appointment. He called my sister who had cancelled her plans that day and she wasn’t sure why.  At the time there was no reason then there was a big reason. We were transported to Mary Bridge Childrens Hospital and Deron followed in the van. We got there and were rushed into an ER room filled with about 30 people ready to work on him. It was horrible!!!! They had to shock his heart not once, but twice. If it hadn’t worked the second time it was open heart surgery. It worked!


He was developing normally until 18 months. He had been off the bottle (not anymore). He looked at the camera when his picture was taken, (not anymore.) He just slipped away after the neck surgery. We had behavior issues, sensory issues, food issues you name it, but he was alive.

 I made promises to Heavenly Father that day in the back of the ambulance that I now had to keep. Deron knew driving behind the ambulances why the blessing had been so different. He felt he wasn’t going to live.

The first doctor we saw wouldn’t give him a diagnosis of autism because he didn’t want him labeled if it wasn’t. He said the global delays in speech and cognitive  were from all the trauma he’d suffered. The problem with that was we couldn’t get services or help until the diagnosis. He was finally 3 years old when we decided to go to Seattle children’s autism clinic. We got the diagnosis.  We were one of the first of four kids in the autism preschool program at Manchester elementary. Ten years later I was hired as a para educator in that program.

How we felt? It’s such a loaded question.  I’m not sure I really knew how I felt because at times it wasn’t really happening, but it was. My mother was on the phone with me during Jaron’s neck surgery. I’ll never forget she kept asking me how I could be so strong. Bottom line it was what we believe, our faith was the only way I could be strong. It was what she and my dad had taught me. It was the fact I was sitting by my best friend (Deron) through it all. We don’t have a perfect marriage, but we’re in this for the long haul together.  I have Multiple Sclerosis (MS). That was diagnosed the same year as the neck surgery. 2000 was NOT a good year for the Smith’s!  It’s how we react to our trials that we’ll be judged. I also was taught that by my parents. Laughing is easier and crying gives me a headache. 
Both Deron and I have grieved at different times in different ways. He had a horrible time when he turned 8 and wasn’t baptized. As a dad that’s huge. As the priesthood holder in our home when each child is born you think of their life milestones. Milestones that wouldn’t be there for Jaron. When he turned 12 and we got the priesthood preview invite from the primary in the mail. I found myself on my knees in the driveway crying. We tried to explain that to our priesthood leaders and I guess we did a poor job of it. We were trying to help the next family that came along, but it’s a hard thing to explain and understand. It’s grieving! When someone dies, we grieve. In autism world, we grieve at different stages in that child’s life. Its okay, but it’s something as parents we have to work through. 
Jaron’s diagnosis was actually a relief for us. We finally had a reason why he behaved the way he did. We had no idea it would be so severe. The diagnosis meant we would finally get help. Therapies, respite, schooling etc…  He was finally potty trained this year sort of (pooping is still an issue). He’s 13, non verbal, funny sense of humor, my angel and our miracle child. 
This year with the help from one of my 3 brothers we were able to get Jaron an iPad and an app called “Talk Tablet”. It’s awesome and it’s given him a voice. He’s actually requesting things (food, drinks, activities, potty etc…) for the first time. There’s hope! We’re transitioning to junior high next year and one of the SLP ladies is on the school districts technology committee. He takes the iPad to school with him. Wonderful tool and blessing! Currently we receive no benefits. We had a review about a year ago and Deron made about $11 too much a month. So, I went back to work.
One of the main reasons I took the job in the autism  preschool program was because it wasn’t the best of experiences for us. In my little fantasy brain I’m trying to learn as much as I can and maybe make a difference in the life of an autistic child. Plus, the women I work with are amazing.

So, I try everyday to deal with the autism the best I can and make my Heavenly Father proud of me and allowing Jaron to stay with our family. My older kids would be different people without Jaron. Patience, loving, understanding etc…

These flowers are called Stargazers its from the Lily family. When we were in the ICU at Mary Bridge for his heart a dear friend brought me a plant of Stargazers.

They are very fragrant and sweet. The flower and smell to me represents life. Jaron lived when he should’ve died. He lived because of prayers and promises I made that day in the back of an ambulance to God. It was because of the prayers of our families and a very loving Heavenly Father who granted us the desires of our hearts. So the work that goes with autism isn’t that bad when you keep it in perspective.

We planted the Stargazer bulbs in the front yard at our old house. Every year they bloomed for a week. It was always the week of the anniversary of when we were in the hospital with Jaron around August 5th – 7th. When we moved last summer it was mid July and really emotional for me because I knew that those Stargazers were going to bloom the first week in August and I wasn’t going to be there. I survived and can always plant more bulbs no matter where we move to. My thoughts reflected back to one summer several years later when Deron was mowing the front yard and “ACCIDENTALLY” mowed the stargazer plant before it had a chance to bloom.
He was forgiven quickly (sort of). OOPS!!!

 From Deron (Dad):
The craziness really did start early.  Like Tam said, when J was delivered she and almost everyone else thought he was going to be a girl.  To be honest I thought he was going to be a boy.  The doctor is holding Jaron and announces we have a son.  Tammy turns to him and says “Are you sure?”  I looked at her and started laughing.  All that money I’m paying the doctor sure as heck better be able to tell if it’s a boy or girl!!!

Blessing… You know, priesthood blessings of any sort can be an interesting thing.  Why are some so strong, so profound, so direct, or why are some harder to give?  I’m sure and I think there are many reasons.  But, even now I have only been part of a couple blessings that were as strong as Jaron’s.  As I began Jaron’s blessing I was able to bless him with certain things, but anytime I tried to bless him something you might consider “normal” I couldn’t.  As Tammy said there was a lot of pausing.  I kept searching for the right words and couldn’t find them.  I even went so far as to try and promise him certain things in his future…that is when the spirit literally held my tongue.  I could not, even if I had wanted to speak or bless him with anything that truly wouldn’t happen in his life.  I couldn’t say anything about marriage, or mission.  So when I was following an ambulance 3 days later, I knew he was gone.  What I didn’t count on was the power of a mothers prayers.  Although things are always as they are supposed to be in the Lord’s hands, we just don’t usually see it.  When I was set apart as a missionary at 19 the one thing I still remember from that blessing that Pres. Bruce Merrill gave me was “You will be a leader of young men throughout your life.”  Now sure almost every calling I have had in my life has been in the YM or Scouting program, but how could he or I have foreseen that I would in a very great sense always have a young man in my home that I needed to care for?

Tumor…Really?  We hit all the green lights with his heart, he is doing great and we only had one little incident, but besides that he is doing great and the meds are controlling his heart rate.  What is this lump on the back of his neck?  First ENT quack wants to do a needle biopsy…um neither Tammy or I am feeling this is good.  The only time in our lives we have ever went to get a 2nd opinion was this time.  Second ENT…he checks out J and then leaves the room (shades of heart incident).  When he comes back he explains in his 20+ years he has never seen anything like this before.  OK…  Then he tells us we have an appointment in 2 days at Seattle Children’s with the head pediatric ENT.  Also that he is not going to charge us for the appt because he didn’t do anything for us.  REALLY!??!  You got us into Children’s with the Chief Surgeon in 2 days…are you kidding me???  He only want’s to know the outcome so he can learn.  (in my dreams this is what doctors have always been like…just didn’t know they existed in the real world).

Children’s is great…of course.  Our poor little trooper.  Tumor the size of a golf ball.  It gets sent around the US to different places.  Results come back negative a couple weeks later.  They only see this kind of tumor at Children’s once every 2 or 3 years.

Very shortly after this Jaron starts to regress.  I don’t think we really even noticed it at first.  I mean this little guy isn’t even 2 and he has been through the ringer.  But slowly we see the changes… then quickly the slide into what we lovingly call the Reign of Terror.  I believe the pictures speak for themselves.  The day I knew things absolutely were not the same was when I was holding Jaron’s hand on the sidewalk and a semi truck went driving by.  Jaron didn’t even flinch or blink or anything…later that day, Tammy went to vacuum in the house, sheer terror.

Between Isaak’s prenatal stroke, Tammy’s Multiple Sclerosis, Jaron’s autism…our plates a little full.  Truly I am absolutely amazed by how much Tammy does.  She’s a rock star!!!!!  One of the greatest realizations for me was when I was talking with my mom who was visiting us.  She mentioned how much Jaron had changed since she last saw him.  I kind of scoffed, I mean…really, we were pretty much at the same point we had been for years now.  My mom lovingly opened my eyes to the fact that when you look out your window every morning at the tree in your yard, it doesn’t really look like it is growing or has changed much.  But if you are away for a period of time, when you come back you will be amazed by the growth and the changes.  Just like my wonderful autistic son.  Growing at his own speed, but continually growing and ever changing.

I am awe struck the more I look back on my life how the Lord prepares you in small ways to handle what lies before us.  Growing up as a youth we had a young man in our ward who had Down syndrome and the experiences I had home teaching him and his family, being in quorum with him, and especially when he asked me to help him bless the sacrament for the first time.  (That is a story in and of itself.)  What a blessing to have had Mikey as a friend.  I then had a girlfriend who asked me to go and help out at Special Olympics one time.  What an eye opening and heart softening experience.  Fast forward to today and these as well as many other experiences have made such a difference in being able to handle and deal with the every day stress. 

The biggest thing I have learned (am still learning!) is that grieving does not always show in the way people think.  I carried it for a long time…unbeknownst to me even.  Satan tried to use the weight of that grief and stress to my potential destruction and the cost of my family.  People need outlets, confidants, true friends, and if we actually do ask for something or tell you something…by the time we do that, we are probably at critical mass.  It’s not the “oh wouldn’t it be nice if” or I could use a hand, it’s like batten down the hatches, we may be going to threat con Delta!  Still remember coming home from one of the hospital experiences and Bruce Lay had come over and mowed the lawn for me.  He didn’t ask, he wasn’t my home teacher, he just came and did.  That was the kind of help I needed.  I mean really…the kids would rather I get them a burger or pizza anyway.  Food as nice as it is not to worry about will never mean as much to me as after being in ICU for a couple days and coming home to a freshly mowed lawn.  I learned that day you have to let others serve you if you want to know how to serve others.

Alright my thoughts are just flowing a bit randomly and I need to go anyway.  Nice to just express them.  The most amazing thing in my life is Tammy.  Because of choices I made the Lord blessed me with her.  We are blessed to have Jaron.  We often say he has the “golden ticket” and it’s up to us to live in such a way so we can be with him.  He has kept myself and our family much more humble and close to the Lord than we would have been otherwise.


autism · diagnosis · Down syndrome

Tough News

 (Though linked to Adventures in Extreme Parenthood, I want to make it clear that the views and opinions expressed in this and all of my blog posts are not necessarily shared or even respected by members of the autism, Down syndrome or special needs communities. The information contained herein is for the most part, crap and subject to change because I try have an open mind. Because of that, there’s brainmatter all over my house.)

We had been talking for months. She had come to me via a support board with concerns about her 2 1/2 year old son. She was worried that he had autism, and wanted to know what I thought.

I had to tell her. I had to. I explained first that I am no diagnostician, and really, I could only tell her what I knew from my experience with autism. Every child with autism is different, for sure. But there are the same sort of red flags with all of them. We had talked in depth about those red flags. We went over the DSM criteria for autism at length. Communication, Social Interaction, Stimming.  But now came the moment.  I had to tell her.

So I drew in a deep breath and slowly and clearly said, “I don’t think your son has autism.”

A pained gasp. A long silence. Then anger. “You’re just like the developmental psychologist! His pediatrician! Sure he doesn’t have ALL of the diagnostic criteria, but I’m pretty sure those symptoms are going to show up ANY TIME!” Then she started to cry.   I wanted to comfort her. I wanted to hug her and say, “I’m really sorry your kid doesn’t have special needs.”  But when I thought those words, I almost started to laugh.

 This kid CLEARLY didn’t have autism. He was what happens when the parent helicopter flies ENTIRELY too close. He was spoiled. He didn’t want to play with kids because he didn’t want to share his toys.  His speech was fine for his age, but she thought he should be saying more words because she and her husband were so damn smart. No joke.  She kept trying to point out things that were “autistic” in him. She said that what I was saying, her pediatrician, and the developmental psychologist, and the Early Intervention team was “dangerous” because it got her hopes up too much. She knew she shouldn’t be hopeful. Dammit. One day she’d prove me wrong. Her kid did have autism.

Five years later. Her kid isn’t anywhere on the spectrum. She had to take up being a martyr in other areas of her life. She works hard at it, too.

I’ve had a lot of people contact me with worries about their kids. And I’m ALWAYS happy to offer my opinion but ALWAYS, no matter what I think, point them in the direction of Early Intervention to get tested. The people I’ve been in contact with usually they fall into three categories:

The first is parents who really do have valid concerns. These are MOST of the parents who end up contacting me.  Some of the time it’s just because their kid is a little, lets say, “quirky”. Other times they’ve eventually gotten a necessary diagnosis.  My heart hurts for those parents because I know how tough that was on me. The trauma of having your child diagnosed with autism is right up there with the PTSD felt by combat veterans. For reals. The study is HERE.

The second group is moms who are hyper-vigilant. They know too much. They google too much.They stress out entirely too much. They don’t want their child to have a disability, but they are scared to death that every little oddity in their child means something is wrong.  Usually their child doesn’t have a disability. These parents are GOOD parents, but maybe a little too good. They need to take a break from the worry and just enjoy their kids.

Then there’s this tiny group of moms who are certifiably nuts. It’s the smallest, yet sometimes most vocal group. They would never say it out loud, but you get this feeling from them that they secretly want their child to have special needs. They want that attention for themselves. They want a sweet special needs feather for their crazy cap.  Unless you’ve ran into one of these parents, you’re probably thinking I’m making this up.  Most of the time there’s nothing wrong with the kid that isn’t a direct result of having an insane mother.

Every time I’m approached with this, and it’s usually online (facebook, email, autism support groups) I make sure to tell ALL three groups that there is absolutely NO HARM in getting their child evaluated if they think something is amiss. I cannot stress my lack of medical background in neurology and diagnostics enough.

 Then I watch. Some get diagnosed. Some don’t. Then the third group rears their ugly head after NOT getting a diagnosis and flood my email box or the support groups with their rage. Because how DARE someone say that their kid doesn’t have special needs?! They go through a real grieving process, too, because there’s something NOT wrong with their kid.

I want to tell them to stop. To give it up. To be GLAD that they aren’t a part of this club. Sure, it’s FULL of the most awesome parents you’ll ever meet. But it’s not worth it. You don’t WANT this. No amount of attention will give you the energy you need when your child doesn’t sleep for weeks on end. The attention you get doesn’t clean your house. It doesn’t wipe feces off your walls. It doesn’t take away the pain you feel when your child is diagnosed. Or the pain you feel when you get bitten by said child.  It doesn’t make the countless therapy sessions less boring. It doesn’t make IEP’s any less sucky.

Just because your child doesn’t have special needs doesn’t mean they aren’t special. There are many other clubs you can join that are specially geared to  batshit crazy  parents. Have you seen Toddlers and Tiaras?
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Friday is Special Needs Ryan Gosling Day over at Adventures in Extreme Parenthood. Be sure to go over and check out the other special needs memes. They are hilarious.  You can also find them on twitter at #SNryangosling. I’m on twitter now, too. Find me at @mostlytruestuff.