Date Night Diagnosis

10 Aug

I’ll start by saying that I’m no expert on autism and that there are some really great resources out there – on the internet, in book stores, at seminars and colleges, etc. with insights and knowledge provided by experienced and credentialed professionals and documented studies.  With 20-20 hindsight, I wish that I had known to investigate these sources a whole lot earlier in my son’s life.  It would have saved us thousands of dollars, multitudes of questions, years of anguish…

In any case, I didn’t know any better, so when my previously loving 2-year-old son Gregory started ‘rejecting’ me and waking up screaming in terror/anger/frustration in the middle of the night, I was lost for an explanation.  I tried to reach him, to calm him, but he shut me out; he wouldn’t let me touch him.  I did what my mother-instinct told me to do…Night after night, I grabbed hold of him and held him firmly against me (fighting, screaming and kicking the whole time), talking quietly into his ear until eventually he ran out of steam and quieted.  Of course, Greg couldn’t tell me what was wrong, and even when he eventually lay his tear-stained face back down on his pillow, he wouldn’t acknowledge me.

I cried myself to sleep too…my poor baby.  We had never experienced anything like this with his older brother, Daniel.  What was so wrong?  What could I do for him?  Why was he in so much pain? 

Having just given birth to our third child, our lovely girl Sarah, I suspected that Gregory might be reacting to her arrival with jealousy.  Perhaps he felt replaced or betrayed by my attention to this new loud, smelly ‘thing’.  But if so, what could I do about it?  So I started reading books about sibling rivalry.

First, we tried to make sure that Greg received lots of one-on-one attention – from both his parents.  Then, I tried talking to him about the problem and trying to give him names for the feelings that he was experiencing – encouraging him to express himself.  But he still wouldn’t or couldn’t say.  Then, we tried to involve him in helping us care for his new baby sister, but he had absolutely no interest.  To him, she didn’t exist:  when he drew pictures of his family, it was always just Mom, Dad, Daniel and Gregory – no Sarah!  When someone talked to him about Baby Sarah, he just turned and walked away. 

And Greg became increasingly solitary, smiling rarely, interacting less.  His body-language changed, to where he appeared very tense, with his shoulders hiked up to his earlobes, poised on his tip-toes, with his hands clenched tightly.  If someone or thing surprised him (even with a slight touch on the shoulder), he reacted aggressively, as if trying to protect himself from attack.  And that is indeed, how he appeared – as if he was about to be accosted at any time – always on high alert.  It saddened me to see my little boy so tense and nervous, unable to relax – even in his sleep.

When those efforts proved ineffective, I spoke with the pediatrician.  Now, don’t get me wrong, we LOVE our pediatrician, and one of the reasons for this is that he doesn’t over-react to nervous mother worries.  So when I explained my concerns, the doctor reviewed Greg’s growth (which was off the charts in both height and weight ever since birth), performed the usual physical and developmental assessments and determined that it was ‘just a phase’ – “He’s doing fine.”  I tried to be reassured by this knowledgeable professional’s words, but my instincts told me it was more than ‘just a phase’.

So, life went on, but Gregory was not ‘just fine’.  We continued to struggle with our quirky boy, trying to mold his good behaviors and discipline his bad ones.  I attempted play dates, in the vain hopes of helping him develop friendships.  I signed him up for activities, hoping that Greg would ‘find himself’.  I took him to a pediatric neurologist and was told, “No, he doesn’t have autism – He makes good eye contact.  He has Tourette’s Syndrome.”  We even had him wear orthotic boots to bed at night for two years, on the recommendation of an orthopedic physician, to cure the presumed tight tendons that were causing him to toe-walk years past the toddler stage. While all well-intentioned, none of it worked.  Gregory continued to be an unhappy, tense, withdrawn boy.

Once Greg hit Kindergarten, all hell broke loose.  Our older son, Daniel, had transitioned well into elementary school.  And the PreK teachers had said that Gregory was ready for Kindergarten, so we were totally blind-sided when things went so wrong right from the start.  On the second day of Kindergarten, I received a phone call from the teacher that Greg had been sent to the principal….WHAT????  I had NEVER been sent to the principal in my entire life!  My little guy didn’t even know that being sent to the principal was a bad thing!  What was going on???  Unfortunately, it went downhill from there…

In hindsight, it was not just Gregory’s behaviors that were at fault.  The teacher didn’t handle things as well as she might have either, and being the professional, I believe the greater responsibility lay with her.  In any case, the two of them did not mesh well at all, and it became a very rocky relationship, to the point where Greg didn’t want to go to school anymore.  His verbal and motor tics increased dramatically in response to the stress.  He felt his teacher’s disapproval, our disappointment, and his own frustration at being unable to do things ‘right’.  It was a daily struggle, with weekly meetings, and ‘talks’ with Gregory.  Luckily for him, his teacher went out on maternity leave in January and he and the new teacher got along much better.  I don’t know what specifically changed, but the new, young teacher must have just ‘got’ Greg and accepted him in all his quirky behaviors.  He still had melt-downs at school from time to time, but overall, he did much better and we were relieved that he might be moving out of that ‘stage’.

First and Second grades progressed slightly better, primarily because the teachers were wonderfully accepting of Gregory’s odd behaviors and needs.  The first half of each school year was fraught with melt-downs and running-away episodes, but by January, Greg would settle in and be more comfortable for the rest of the school year.  And we would think, yeah! He might be moving out of that ‘stage’…  until the next school year began and the cycle repeated itself.

In Third Grade, the year started off with the usual poor transition, with melt-down episodes of hiding under desks, running away from school, tearing up school work, and disappearing into stairwells.  Gregory was a desperately unhappy child, saying that “No one understands me.” And “I’m not like other kids.”  His tics were rampant, he was barely sleeping at night and he was always by himself.  I knew that something had to be done, but still didn’t know in which direction to turn.  This time, I made an appointment with the Head of Pediatric Development at St. Joseph’s Children’s Hospital…I couldn’t get the appointment for another 6 months, but I needed to do something and didn’t know where else to go.

And then, the ‘Date Night Epiphany’ happened.  For a number of years, my husband and I would schedule Date Nights every few weeks, for just the two of us to go out together and talk.  (This has served us well throughout the years – I highly recommend it!)  In any case, that particular night, Barry had to take a lengthy phone call from his boss in the middle of our Date Night, just as we were finishing dinner.  Knowing how much I love book stores, he knew that I could happily browse for hours and therefore not get annoyed by the interrupted Date Night, freeing him to take the call without guilt. 

So, to Barnes and Noble we went, where I was drawn to the section on Mental Health, still trying to put my finger on Gregory’s strange set of issues.  Bi-Polar – no; ADHD – no; Oppositional-Defiant Disorder – no.    And then the epiphany:  I picked up the next book on the shelf – Tony Attwood’s The Complete Guide to Asperger’s Syndrome[1].  Although I had a vague notion of what autism was, I had only heard the term Asperger’s Syndrome a few times and had no clue what it was.  So I turned to the page listing AS symptoms – and there he was, in all his quirky glory!!!!  I couldn’t believe my eyes…out of the 20 symptoms listed, Gregory matched up with almost all of them.  I was overjoyed – not that he had AS, but that now I had a direction to go….understanding and hopefully treatment was finally on its way!    I grabbed every book I could find on the subject and virtually ran to find Barry (having just completed his phone call, luckily) to present him with the joyous news!  Our son has Aspergers!!!

All that Friday night and the rest of the weekend, I read…and read….and read.  Light bulbs were going off in my head constantly as Gregory’s behaviors started to fall into place and make sense.   I hugged him and told him how much I loved him – for the first time with an understanding of all that he had been struggling with.  My brave boy had tackled so much on his own, trying his best to cope in his own way, to circumstances and situations that were so difficult for him…Sometimes sadly, even when the well-meaning actions of his parents and teachers exacerbated the problems for him.

But now, things would be different.  I knew what we were dealing with and I was ready to educate myself about my ‘opponent’.   I still went ahead and eventually visited with a Pediatric Neurologist for an official, unbiased medical diagnosis, but I was already convinced that this was it.  Time to strap on the armor….  Look out world – I’m a Mama with a Mission!


[1] Tony Attwood, The Complete Guide to Asperger’s Syndrome (Jessica Kingsley Publishers, 2007).

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27 Responses to “Date Night Diagnosis”

  1. Karin August 10, 2010 at 10:44 am #

    but I need to say something. So I’ll just say that I look forward to reading more about you and your wonderful family coping with life.

    You’re amazing!

    • Joanne Houldsworth August 10, 2010 at 11:46 am #

      Thank you, Karin! I find it difficult to ‘expose’ myself and my family this way, but hopefully by increasing awareness another family can benefit.

  2. PC August 10, 2010 at 10:11 pm #

    At times you just don’t know where to start with something like this. It great to see you step out of the shadows, to help others. There is a big unnecessary stigma around this topic that needs to be broken. For every parent at the start of this journey there is the feeling of aloneness. You show that the path is not easy but you can get answers and a way forward. You do climb a very steep learning curve, but when you get the small victories, they are so sweet.

    One of the best resources for this area is the Mosaic Group on Yahoo
    http://health.groups.yahoo.com/group/Mosaic-List/

  3. RZ August 10, 2010 at 11:27 pm #

    As a “professional” in the field, I find such personal stories grounding and a necessary part of my ongoing education – to never forget the struggles of the ENTIRE family. I am a mom first and a nurse second and am touched by your entries thus far (and tearful already as I am a Vervoort at heart as well!)I look forward to hearing more of your journey.

  4. Jennifer August 11, 2010 at 4:41 pm #

    I enjoyed your post. My life with my daughter has somewhat mirrored yours with your son. She was diagnosed with AS a year ago at the age of 6. That same Tony Attwood book changed my life too. I look forward to reading more.

    • Joanne Houldsworth August 11, 2010 at 4:48 pm #

      Thanks for reading, Jennifer and I look forward to hearing more about your experiences too!

  5. Caitlin August 13, 2010 at 12:30 am #

    What a great story, and certainly no coincidence that your husband got that call. Tony Attwood is an excellent resource. Also check out another highly respected Aspergers expert William Stillman. He writes eloquently and clearly about Aspergers in both a philosophical and very practical way. He himself has Aspergers, and is one of the most genuine and beautiful people I’ve ever “met” (we’ve never met in person but he worked with me on an interview for my blog, which was an amazing personal experience for me). The Everything Parents Guide to Raising a Child with Aspergers is a great practical guide, and Empowered Autism Parenting is also a must.

    Our 7 year old son was diagnosed last year and Grade 1 was literally torture for him. He has come so far, now that his family and his environment are more understanding of and conducive to his needs.

    In those early days of the diagnosis, I definitely felt that his Aspergers (autism) was my opponent, as you described. But over this past year I have come to deeply respect it, as an integral part of his being. It is a part that can often make being in this neurotypical world more challenging for him, but is also a part that makes him so profoundly beautiful. You may or may not come to change your view of autism as an opponent, but do keep yourself open to the possibilities :)

    I look forward to more of your posts!

    Caitlin
    http://www.welcome-to-normal.com

    • Joanne Houldsworth August 13, 2010 at 12:44 am #

      Caitlin, I appreciate the information – I’ll check them out. And yes, I agree..over the past two years, autism has become less of an ‘opponent’. I’ve read a lot of Temple Grandin’s books (and even seen her – and her mother! – in person) and she has pointed out the many strengths that go along with the challeneges. I plan to discuss this aspect in a future post. Good luck with your journey – and I’d love to hear more of your experiences!

  6. Charlene August 16, 2010 at 10:46 pm #

    Joanne I Thought I was the only parent out there at one time with a child with a learning disability and soon found out I was not alone.. Matt struggle through grammar school, I fought with the school board and the psychologist for six years before they help us.. After doing that and matt got his help in the school he went from doing C /D to the Honor roll all through high school. He made us proud and he got an Ontario Scholar… Joanne you have a wonderful boy there. He up your good work he too will make you proud of him… Our prayers are with you and your family…

    • Joanne Houldsworth August 16, 2010 at 10:54 pm #

      Thanks very much Charlene! Matt is such a great person…how great that you were able get him the help he needed early on. He has a great future ahead of him!

  7. Tim August 25, 2010 at 11:07 am #

    Reading your blog and the first thing that shocked me was the night terrors he was having. My son had night terrors for about a year and my parents tell me I also had them. We both have asperger’s so I think they may be linked. I found out about asperger’s only after my son was diagnosed with it. It was like a light went on in my head and I thought back to all my problems growing up and always wondering what was wrong with me. I can nnow explain why I did the things I did and acted out. I have created a new forum for parents with asperger’s kids. Please join the forum and share your blog. I think it is great for everyone to tell their story so parents don’t feel alone. http://www.aspergersparentsupport.org

    • Joanne Houldsworth August 25, 2010 at 12:52 pm #

      Thanks Tim – It is amazing how similar our experiences are – once you know! Thanks for setting up the new site – I will definitely check it out!
      Continued good luck to you and your family,
      Joanne

  8. Patty September 15, 2010 at 11:16 am #

    I came to your blog via Wrong Planet and just had to make a comment. Your paragraph describing your son’s Kindergarten experience could have been written by myself except for the fact that we made it to the 2nd week before getting that call! My son is now 9 and I think I will show him your blog. Thanks for sharing!!

    • Joanne Houldsworth September 15, 2010 at 2:44 pm #

      Thanks for your comment, Patty. Isn’t it amazing how parallel our experiences can be? Hopefully we can all learn from one another! Good luck with your journey, Joanne

  9. kelliefish13 September 30, 2010 at 2:42 pm #

    Just a note, not all teachers have been trained to deal with special needs of any form, unless they have gone and done extra study themselves, or had extra training after becoming teachers. So unfortunately its quite possible for a teacher to have no understanding of Aspergers syndrome until they get a child who has it in their class.
    Stupid and frustrating for both teachers and parents.

  10. sparksinshadow September 30, 2010 at 7:57 pm #

    I like the straightforward way that you tell about your experiences, and how you’ve drawn me into the the heart of your story along with you. I have to tell you how lucky you and every other parent with a diagnosis for their child is. I know that doesn’t take away from all the frustrations that can creep up in the course of a week or a day, but having someplace certain to start from is a kind of gift.

    My husband and I married in 2004, and he wasn’t diagnosed until 2008 when I had a moment similar to yours in the bookstore, and then went searching for information and then professional help. After months of pain and denial and depression about it, he is extremely grateful now to know what it is that has made him feel so apart from other people his whole life. As you know, not everyone on the spectrum has all the exact same symptoms. The ones that got my relationship with my husband into trouble were his discomfort in suddenly living with me and not being able to adjust to me always being there when he got home (even though when he was calm– like when we were dating, that was what he wanted) and the fact that if I went to a lecture or something with him just because he was my husband and I loved him, he felt it as a defeat because he could tell that I wasn’t completely engrossed in it, as he was. His psychologist, an autism spectrum specialist, told us that his noticing how much I was interested in something was actually uncharacteristic of Aspergers.

    What I’m trying to say is that if my husband and his family had received information when he was a child, perhaps he could have been loved and valued for the wonderful, smart, loving person he really was. He would be happier today, probably focused throughout his schooling on the things he was passionate about and working in a profession that suited him better, and most important, he may have had experience in communicating to the people close to him (like me) what he would need from us in difficult moments. Can you imagine (before a diagnosis) trying to hug a fifty year old man with Aspergers while he’s upset, and hearing him berate you for being cruel and trying to hurt him?

    I can tell by your determination and your heart, that no matter what difficulties your son may face, he has a heck of a head start in life because he was born into your loving family.

  11. melodee@ double scoop October 1, 2010 at 2:42 am #

    Oh man…the similarities between your journey with your son, and mine with my son….The night terrors…the doctor saying it was a phase….the next doctor saying that it could not be autism because he “made eye contact”
    My son did not get the proper diagnosis until he was 9, and it has helped tremendously to know what we are dealing with, so that we can help him. I completely understand your joy at the discovery.

  12. paula November 15, 2010 at 6:42 pm #

    You’re the first person I’ve met who has experience with the toe walking issue. My daughter is 15 now and still walks on her tiptoes. I don’t think it will ever change. From the time she could stand, she was high up on those toes and this should have been a big flag to her pediatrician that something was going on. She was finally diagnosed at the age of 10.

    Your son’s school history mirrored hers. We eventually took her out of public school in 6th grade and now we homeschool her. Things are so much better now.

    I’m available by email if you ever want to talk about the toe walking thing. I’m enjoying your blog!

    • Joanne Houldsworth November 15, 2010 at 7:12 pm #

      Thanks Paula! I agree – the toe-walking should have been a major red flag to our pediatrician….wish I had known better at the time. We could have started some early intervention or at least understood what some of the issues might be. Anyway, he is much better with the toe walking now, only doing it occasionally, although he still has sort of an odd gait even without that. We sent him to a special gymnastics class for awhile that helped a lot with his balance and coordination, so perhaps that helped with the toe walking too. Wish I understood more – there are so many interconnected aspects to all this…
      I’d love to hear any ideas or suggestions that have helped your daughter too!

  13. Sue January 23, 2011 at 6:46 pm #

    Hi, I’ve just found your blog today. Thanks for sharing your story. I live in Sydney Australia. My son is 3 and in preschool full time. His teacher at preschool has asked me to get him checked out by developmental pediatrician because he is not playing with the other kids, seems to lack empathy, avoids eye contact a bit, has a speech delay and is very obsessed with trains. My husband and I were oblivious (this being our first child) to these issues. I have read the Attwood book about Aspergers and he does seem to have a mild case but it also says that it is difficult to get a reliable diagnosis at this age. Am I wasting my money taking him to the paediatrician so young? They are very expensive. He is receiving speech therapy and the therapist says he is very intelligent and learning fast. He is a visual person but has difficult with listening and memory – this sounds more like ADD. It’s so stressful when you beautiful boy is being criticised by others. My husband is in denial and gets angry whenever I talk about it. Well you know what they say – if it doesn’t kill you it makes you stronger. Any tips for me?

    • Joanne Houldsworth January 23, 2011 at 8:40 pm #

      Thanks for writing Sue. I know exactly what you are feeling. It is so difficult when you know that something is just not ‘right’ with your lovely baby and you don’t have the answers. My husband too, was very reluctant to acknowledge any issues or discuss the concerns, so it made things doubly difficult. (I guess it’s the guy way….)

      Anyway, I’m no expert but since your son is already receiving services, is making good progress and you are already educating yourself about Asperger’s (and are therefore on the look out for symptoms/treatments/etc.,) I don’t think a special pediatric visit is necessary at this time – unless you need an official diagnosis for some reason (such as insurance or early intervention, etc.) Besides, there is a good likelihood that the pediatrician will be unable/unwilling to give you a definitive diagnosis because your son is so young, and presumably has a mild case. (I started speaking to my pediatrician about my concerns when my son was about 2 1/2, but he just kept telling me everything was fine. As you read in the blog, it took us another 6 years to finally get the correct diagnosis…)

      My advice, for what it’s worth, is to keep doing what you are doing. Just keep learning, watching, loving and encouraging – It sounds like you are on the right track. Give your son lots of experiences with other kids and the outside world, even if it is difficult and he would prefer to stay at home and play by himself. (This is a strong recommendation from Temple Grandin as well.) Use his interest in trains to motivate him to do things that you are trying to work on, such as eye contact, verbal skills, etc. I’m not sure how your son is about giving/receiving physical affection, but my son had a very difficult time with it at that age. Regardless, I persevered with hugs, kisses, and lots of physical contact. (Today, Gregory is extremely affectionate with me and will come and hug me out of the blue and tell me he loves me …. worth all the money in the world! :-) )

      I know you want the best for your son, but in the end you will love him for who he is no matter what….the rest of the “stuff” won’t change that. Good luck with your journey! Joanne

  14. Jennifer February 13, 2011 at 4:16 pm #

    Thank you so much for writing your blog. My 5 year old son was diagnosed 3 weeks ago, (although we had an idea that something was wrong for a couple of years) and as soon as we came home, I immediately went online to better understand what this meant. I struggled with finding many blogs/sites with what I considered non-relevant information to our particular case. I even started thinking about starting to write our own as a sort of coping strategy in going through the process of adjusting to a diagnosis of ASD. Yours is the first that rings true to the types of experiences we are having and we appreciate your candour in all the “adventures” you are having.

    • Joanne Houldsworth February 13, 2011 at 5:33 pm #

      Welcome, Jennifer…and good luck with your journey!

      • KDM September 13, 2011 at 6:33 pm #

        I wish you all the best with your son. It can be an uphill battle at times, deeply rewarding but deeply frustrating as well. I’m writing to you from the persepective of a mother with a 17 year old daughter with Aspergers and begging you and others to do the difficult thing – KEEP WRITING and sharing as your kids get older. Aspergers is a lifelong ride, and the focus is often too finely tuned on identifying youngsters at an early age. It’s life changing to to have that Eureka moment and finally discover what lies at the root of your young one’s differences, but I have to be honest – the hardest part of the road lies ahead. Asperger’s is NOT kind to teenagers. Middle School is Aspie hell, and High School brings whole new challenges. We now are on the brink of driving lessons and sending her off to college. Like so many Aspies, my daughter is academically very bright and read at three. There was no way to hold her back from kindergarten, but with a late August birthday she’ll be graduating high school at 17, intellectually 25 and emotionally 14. There is very, very little out there to help guide parents through the middle and high school years, let alone navagating college. I don’t want be discouraging in any way and as you already know, our children are unique gifts, perfect as they are. Just be prepared: the world grows more complex as they age and yet less and less sympathetic and accepting of their differences as they mature and more is expected of them. God speed and good luck along the way.

Trackbacks/Pingbacks

  1. Quora - January 22, 2011

    At what age can a child be diagnosed with Aspergers?…

    First, we need to differentiate between a clinical diagnosis and just a logical belief.  I can’t speak for clinical here. Aspergers is much harder to diagnose than Autism which has red flags such as a lack of language.  People with Apsergers are usuall…

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