Look Through My Window.

[When I began this blog, in January, my goal was to write about my experiences with my son.  Nothing more.  As I wrote I got to know the autism community, through this blog and Twitter, and an amazing thing happened.  I found a wealth of information, support, answers to specific questions and really genuine and kind people from all over the world who offered advice, support, comfort and friendship.

This is Autism Awareness Month.  There was a lot of talk about it on the first couple of days of April and then, it was back to business as usual.  Let’s not forget, as the month wears on, that we can still shed the light of awareness, blue or otherwise, every day.  

This post is for the ones who don’t know us- the ones who pass by us as we fight our battle every day.  It was inspired by what Stuart Duncan wrote here.]

So you have a child and you feel something may not be quite right.  You don’t want to face it or you aren’t quite sure, or you haven’t found the right combination of words that have struck home with you.  Maybe, just maybe, I sound like you.  Maybe I can help.

Take a look through my window…

It’s a pretty view, if you ignore the dark edges, that surround it.

I used to be you.  There was a time that I dreamt of having a family.  I was never so bold as to say out loud that I thought I would be a good mom.  That would just not be nice.  Plus, I had my doubts.  Would I have patience?  Because I sure did not have it before I had my child. Did I want to give up the selfish days?  Of course, I did.  But there was fear.  Fear of the simplest task of changing a diaper or breastfeeding or giving a bottle.  How would I burp a baby?  How would I hold one?

How would I afford a child?  How could I pay for school?  Because, surely, I would want to give my child the best education.  I knew I could manage it.  After all, I was smart enough to have an advanced degree and career before planning a family…

And health wise?  Oh, I was the healthiest mom-to-be of all.  I did not smoke or drink.  I worked out for 1.5 to 2 hours daily and logged every mile, calorie, and heart rate.  I cooked the healthiest meals, in all the right food groups, and ate organic produce.  I took vitamins and drank water.  I was the perfect specimen.  Not like all those moms who had one night stands and did drugs, drank or ate nothing but crap during pregnancy.  No, no.  I was way better than all of them.

There was one more thing.  I would never -ever- let my child behave the way I saw other mothers let their children behave in public places!  What kind of parents were these that would not control their kids in public?  Oh, the screaming and crying in the lines at the mall, grocery store, theater, doctor’s office, post office, restaurants and on the planes!  That was me you saw casting that evil glance at the mom who child was screaming and kicking and having the tantrums there.  I would be better.  My child was going to be perfect.

I got pregnant. I bought everything the pregnancy world of consumerism thought up to sell.  I gave up everything including phthalates, fish, caffeine.  I drank only water.  I took vitamins and folic acid.  I cared.  I came home with a tiny bundle of joy.

But then something happened.

The tiny bundle of joy just would not stop crying.  For 2.5 years.  Every night.  Every day. He grew but did not nap.  We were told it was colic. The tiny bundle grew larger than all the other children.  He topped the charts in size. He did not eat.  He took little food, supplemented with bottles of soy milk for 2.5 years.   It was the only thing that seemed to quell the crying, if only for a half hour at a time.

There were times in the middle of the night, I wanted to take him to the emergency room because his screaming terrified me.  It was relentless.  Only the theme song from a cartoon would soothe him.  I played it over and over from 2:30 in the morning until 4 a.m. when he finally fell back to sleep in my arms.  I was exhausted.  And yet, I still did not know.

The growing boy did not talk to me.  He did speak.  He spoke the requisite number of words, according to the pediatrician.  He did not use the words in the fashion in which they were intended, although occasionally he would and those were the times I’d write it down.  The growing boy knew his alphabet and numbers before he was 2 years old.  He started to spell as fast as he could recite his alphabet.  He knew his shapes and the planets before he was 2.5.

Just because he did not speak to me, I reasoned, did not mean he was behind the other kids.  The boy was a genius.  He would get to it in his own time.  There was nothing that would indicate a delay or a -don’t even speak it- developmental problem.  That was ridiculous.  If I ignored everything else, and focused on the genius, it would all work out.  I did not know.  Maybe, I did not want to know.

The boy would repeat things – lines from TV, books, and his toys.  I thought this was the way all children learned to speak. He taught himself how to read before he was three.  I still did not know.

The growing boy would never stop running. When there was no room, he would run full-on, body slamming himself into the walls.  He would laugh and laugh.  He would fall to the floor, get up and walk on tiptoes.  That was okay, I told myself.  He’s a boy with lots of energy.  He’s having fun.

He would spend hours watching the wheels on his cars spin around.  He would play with buttons on toys.  He wanted a toy toaster so he could push down the button and watch it pop up.  He wanted to play with timers and computers and phones.  That was okay.  There were toys that did all those things.  It must be normal.

Before I knew it, I had become the woman to whom I used to give the evil eye.  It was my son, my joy that would scream in the middle of the mall and fall to the floor, limp and yell and kick and cry, tears streaming down his face, as I carried him out of public view.  It was my son who would grab things that did not belong to him and cut people off  to touch the handicapped button to enter or exit a building.  I still did not know.

Finally, one day, when he was 3.5 years old, two weeks before Christmas, the pediatrician said the six letter word I had avoided like the plague.  She said it gently while my son screamed and cried under her exam table.  “He may have autism.”

It was the end.  It was the beginning.  It is my life.

It really is not as scary once you hear the diagnosis for real.  You don’t have time to be scared or self-absorbed or anything other than your child’s advocate.  That advocacy comes from love.  Pure and simple.  The only thing I would change if I could is that I would have demanded testing for a diagnosis when he was much younger if I had knownIf only I had known.

Look at the signs of autism.  You can find them here and here and here .

Do not blind yourself to autism.  You already love your child with all your heart.  Get early intervention.  It is your child’s best chance.

Advertisements

About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
This entry was posted in Autism, Uncategorized and tagged . Bookmark the permalink.

32 Responses to Look Through My Window.

  1. C... says:

    My son never had language delays. In fact he went from single words to sentences by the time he was about 2.5 to 3 years old and was always very happy.

    The few things that were obvious autism traits were his keen attention to toy trains and cars and watching them roll.

    • solodialogue says:

      I think, in a way, the lack of language delays, can make some of us (me) less inclined to believe anything might be wrong. So, I so appreciate your comment, Claudia! I hope others who might be on our path read it and seek out some testing for their children.

  2. Lucy says:

    Excellent post, I only wish every person who doesn’t already have a child could read it, and keep it in mind. Gosh, those 2.5 years of screaming are tough aren’t they? My middle son did the same, morning noon and night, he’s nearly four now but I remember it so well…

    • solodialogue says:

      Thank you Lucy for coming by and commenting! I wish too that I could get it somewhere where people who don’t have the diagnosis yet could see it! The screaming all night is (knock on wood) gone now for me too! That stuff was scary…

  3. Rachel says:

    I was a very quiet, compliant child (abnormally so) who was rarely a problem for anyone (warning lights, ya think?), and yet, I relate to so much about your son. I could read at three, I was very precocious, and intellectually, I was well ahead of other kids my age. But I didn’t speak a word until I was 2 1/2 (and then, oddly enough, I began speaking in complete sentences, although I have no idea whether they were expressive or echolalic). I had no concept of why I’d want to play with other children and, until I discovered bikes and baseball at 6 and 7, I didn’t. To this day, I will fiddle around with the car doors and wheels on a toy car and find it very satisfying; I just caught myself doing it the other day — and I’m 52!

    Probably the luckiest thing for me is that my parents concentrated on the genius part. I didn’t present with classic autism, and I came from a generation in which “children should be seen and not heard,” so no one perceived a problem. I just grew up being told that I was very smart, and I attributed all my differences to this one fact.

    I think it’s extremely important that you praise your son for all amazing stuff he does. People call them “splinter skills.” Bullshit. They are gifts, and he should learn to value them. The fact that my parents raised me with praise about my intellectual and musical gifts has saved my life, over and over and over. It gave me a healthy basis of self-esteem and something to be proud of in a world that likes to tear autistic people down for all that is “wrong” with us.

    • solodialogue says:

      Thank you Rachel because you offer me a glimpse of what it may be like in my son’s world. It’s a valuable perspective I could gain anywhere else and I am grateful for it.

      I definitely encourage his gifts and praise him for them all the time. He does amaze me every day with the extent of his reading ability! 🙂

  4. Lynn says:

    It sounds like we were so much alike in having a child when we were older, but taking care of ourselves better than most women in their 20’s. I guess sometimes it just doesn’t have anything to do with not drinking caffeine…wish I’d known that at the time!

  5. Thank you for sharing this. Perhaps it will help someone someday. I often wonder why more parents are not informed about the signs of autism. It boggles my mind to be honest. And it simply *kills* me when friends of mine tell me about their suspicions about their other friends’ children, but they don’t say anything out of fear of committing a social taboo and losing a friendship. I’m thankful to my dear friend that said of my complexly flapping, nonverbal, non-walking 16 month old, “Now don’t take this the wrong way, but do you think something’s wrong with him?” I brushed it off quickly with some explanation or other and I was really P-ed off at her for a little bit, but the seed was planted in the soil of my mind that was already germinating the very same notion. Her words helped me as much as they stung to my core, because someone else was seeing what I was. By 17 months we were starting our EI program and my little one is slowly blooming now at 3 years of age. I certainly hope that this post gets into the right hands at the right time. I will make a difference. Thank you for sharing.

    • solodialogue says:

      Thanks for stopping by Aimee!

      I wish I had known more earlier. I read articles in the newspaper but they were always about statistics and stereotypes that my son did not fit. Some aspects were similar which drew me to the articles in the first place but I distinguished my son from falling into the diagnosis because he did not “fit”. There was nothing in the mainstream media that said every child is different – don’t rely on these signs…

      The added problem was that my son is on the “high functioning” end of the spectrum so I further deluded myself into thinking he had a different “personality” rather than a neurological disability. It would be great if I could help someone who needs it by this post. It’s probably not getting there but I’m trying.

  6. I know this post is intended more for people who don’t know about autism, but I really enjoyed it. It’s interesting to hear everyone’s diagnosis stories and early experiences. Brian and I were a lot like you with it all- we assumed that we were doing everything right and our son seemed advanced in a lot of ways, so we blamed the unusual things on him being a late talker and a very active little boy. Sometimes I feel guilty when I read about other people pestering their doctors for testing and help early on, because their gut just told them something was wrong. We were kind of backwards- the doctor started pestering me to have him tested, and I was the one telling the doctor he was fine…. oops. Anyway, so glad to have met you through blogging. 🙂

    • solodialogue says:

      It is difficult with a high functioning child to recognize the disability, even though you know something is not right. I know that exact rationalization – late talker and active boy. I too, feel guilt when I read about how much other parents got early testing at 18 months! I had NO clue at 18 months, 2 years, 3 years even! There were no kids in our neighborhood and his only “friend” was someone I saw at the mall from time to time so I did not see how other kids interacted with their parents and others.

      I’m glad to have met you, Andrew and Brian through blogging as well!! You guys are awesome! 🙂

  7. Lizbeth says:

    I came at our diagnosis from the other end. I knew something was wrong and didn’t know what. I finally figured it out and started the ball rolling, A was three at the time. Hindsight is 20/20….

    I asked why they don’t have something hanging on the wall at the Peditrician’s office (you know, in each room) and was met with a hummmm…. I’m going to press them again at our next visit.

    • solodialogue says:

      Wow, Lizbeth, you are so smart! I would love for pediatricians’ offices to have a chart on the wall – just like the anatomy charts! That would be perfect (and it might even help some pediatricians!) Brilliant idea!! I love it! 🙂

  8. Teresa says:

    How easy it is to be the perfect parent. . . until you have kids. Same with special needs children. I still find it frustrating when well meaning people offer advice (or criticism) of someone’s child rearing methods who have never walked in the footsteps of a parent whose child is hyperactive, hypersensitive to sounds, has a fear of crowds, food intolerance, etc., etc.

    Though it may not seem like it to those with young children, autism awareness is much more prevalent than even 20 years ago. But understand that the autism spectrum has also become so encompassing that it’s hard to find two children with all the same issues and likewise treatment methods will vary widely in effectiveness.

    No doubt early intervention is a very good thing. In our family we used to say (after our daughter was born), if only Matthew had been the second born. We would have been more aware. We always wish we would have realized sooner the problems and then sooner been started on the solution but sometimes we just have to accept today for today. We’re all blessed with plenty of great hindsight. But don’t beat yourself up over it.

    • solodialogue says:

      I know you are right about autism awareness being more prevalent than it was 20 years ago. I never heard of autism 20 years ago. I know that you are right Teresa about hindsight and thank you for your kindness. But if even one mom reads this and thinks, well, maybe I should ask the pediatrician about it, then I feel like I’ve accomplished something. I will probably never know but now it’s out there in the blogosphere and I can hope it helps through a google search or some other way…

  9. Broot says:

    Well it helps me that you’ve written this… my “a-dar” as it were has been right so far with the parents and children that I help at work (I work at an early childhood education centre where the parents attend with their children) but knowing more things to look for is a very good thing.

    I totally identify with Aimee, above. I was that friend to two of our Moms – One kept saying “he’s gifted” and I had to say “Yes, you’re right, but I think we have to also consider this.” And for the other, I had to do 10 weeks of observations and gentle suggestions (recorded in the child’s portfolio) before she had him checked. But I definitely wasn’t the good guy. And it was hard. It’s good to hear you think that was a good thing to do, even though I nearly lost friendships over it.

    • solodialogue says:

      Oh “Broot”! You completely make my day, leaving this comment! I’m so glad that – working with children – you are able to get parents thinking about the signs of autism. Really, anyone who hears this is not going to blurt out that they think you should be their BFF – right away. We get mad at those who make us see what we can’t or don’t want to see. Then, once it is absorbed we become eternally grateful. I wish you’d been around when my son was so much younger. Good guys come in all flavors and colors (I know you get this reference) and you are definitely one of the the good guys!! ❤

  10. Kelly says:

    Hi Karen – great post, as always! My story is a bit different, in that I knew that there was something wrong with Ted as soon as he came into our lives. Almost immediately I started buying autism books and doing research (google – haha). The tough part, for us, was convincing the doctors that it wasn’t one of a million other confounding issues causing him to behave the way he was. It took about a year and a half of begging and presenting video and photographic evidence to the docs before they even referred us to the specialist. Of course, after that, the diagsnosis came rather quickly. I have let go of my anger with the docs because I do believe that they were doing the best they could. Thankfully, we have the dx, a wonderful ABA therapist and we can now focus on helping Teduardo be the best Teduardo he can be!

    • solodialogue says:

      Kelly, why am I not surprised? Because I’ve known since I started reading you that you are hella smart!! The medical community is really confounding. With the diagnosis rates rising (for whatever the reason – increased awareness – more people have it) there is still an immense amount of denseness in the medical community. I read time and again how doctors, ambulance personnel, nurses and others completely miss the signs! There is no other way than to persist and keep others aware. Glad you have Yoda and Teduardo being the best he can be!! (I love both of them!!)

  11. Great post! To me this is what this month is really about- reaching those parents who don’t yet see it. I took Pudding back to the pediatrician who told me not to worry. I asked her to remember my kid and never miss another again.

    • solodialogue says:

      Thank you mummy!! I hope to reach someone – anyone! Medical profession, teachers or parents who need the signs so maybe they will recognize something familiar and seek help. I like Lizbeth’s idea of getting the pediatricians to post a sign in their exam rooms, waiting rooms, etc. of the signs of autism!

  12. Brian says:

    Another good post that shows how people feel during the whole process. Nice. Nice.

  13. bbsmum says:

    I’ve never met a parent who didn’t say “If only I’d known sooner”. Great post!

  14. This is a great story, Karen… thanks so much for sharing and finally introducing yourselves 😉

    I’m not playing devil’s advocate on purpose, but another perspective on parenting… Coming from the adoption side of things, we were carefully trained to expect, well — anything. We were told that birth mothers may not have even had prenatal care and just because all the medical records *appeared* to be in order didn’t necessarily mean that our child would be in perfect health.

    We took Little Miss to an army of specialists just three weeks after she landed in the US and have been looking for *something* since the adoption specialist observed that our 10-month-old was unable to sit up on her own and showed no interest in crawling.

    Unfortunately, we blamed a LOT on the adoption process. After all, Little Miss had had three different sets of parents before she even arrived in the US, not to mention a couple stays in an orphanage. Of course, she would be delayed.

    My point is that even if you’ve been taught to look for something wrong, you can still be blinded by other circumstances. That’s why knowing the signs of disorders like autism (and SPD, in Little Miss’s case) is so important. I’m proud of all you have done with this blog, Karen and I look forward to seeing how you will share the blue light next. Kudos, lady!

    • solodialogue says:

      Karla, I always welcome your perspective! Your path to discovering Kaia’s diagnoses was and is a very difficult one. It takes a very special mom to not just love a child but research and argue and help a child while searching for a more rare diagnosis like Kaia who presents with such similarities to ASD with her sensory processing and MERLD. Someone was definitely looking out for both of you to have you find each other. It was just meant to be. Reading and seeing you with your daughter is such a pleasure every day. The love you two share is really priceless!

  15. Fi -From the Madhouse- says:

    Oh wow…..you must have been spying on my life 8 years ago to write that!!

    My middle boy slept thru the night for the FIRST TIME when he was…..almost FOUR years old!!!

    Oh I remember the constant crying, screaming and heartache!

    I’m so pleased that you now KNOW and it’s only up from here 🙂

  16. eof737 says:

    You see a lot through your window and there’s growth there too…
    Keep it up Karen! 🙂
    Eliz

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s