Looking back and next steps: the power of pause

It is critical sometimes to stop and observe where we are at and to notice how H is growing and developing. The changes are small and incremental (though at times these little things can seem HUGE to us) and might otherwise go unnoticed or unappreciated. These stop moments are critical for planning the next goals for H and for celebrating accomplishments.

Sometimes I have to look back to be able to see where I have been. Like steps on a frosty-February-footbridge, it is not until after I have made my way across that I can look back and say,  Ahhh… yes… That is the way I came.

H will be 13 this year, but we began to investigate and have concerns about his development when he was 2. He initially presented with speech and language concerns, and some sensory integration issues, and we went through the routine tests to rule out hearing difficulties. At 3 H had his first speech and language evaluation. By the time he was 4, and we were filling in some of the gaps in his language development, we could see that there was more going on and we sought a referral to a pediatrician, who supported our Autism query. At this point H was referred to Children’s Hospital for a multidisciplinary evaluation and the almost one year wait began. The process eventually included evaluations and interviews by an OT (occupational therapist), infant psychiatrist, educational psychologist, and SLP. At the same time we had the services of a program called Supportive Childcare for H’s preschool, and we delayed his entry into school as he was a fall baby and we felt he would benefit from an additional full year of preschool. We thought it was far more helpful for him to be the oldest child in his class by five weeks, rather than the youngest by 11 months. We also felt strongly that we wanted to have supports for his challenges in place prior to him beginning kindergarten – this meant essentially, having completed the diagnostic process. By the time he was 5 H had been subjected to 4 SLP evaluations, and a myriad of other tests and we had filled out countless forms and observations, etc. He was diagnosed with ASD (Autistic Spectrum Disorder) a few months before he turned 6.  None of these things just landed upon our doorstep as services for our son: each one had to be sought out and advocated for or, at the very least, required a number of meetings, wait-lists, and/or endless phone calls or emails.

It is easy to look at our boy now and forget some of the struggles we have faced. It is easy to block out that the only time I ever took him to the mall was at Christmas to see Santa, and this was made obvious to me when he asked to see Santa at the mall in the middle of the summer. H thought the Jolly Old Soul was there year round – and had seen no evidence to prove otherwise.

It is important to look back, to take account, and to consider how far our little guy has come. It is important to consider and celebrate the accomplishments and appreciate the thousands of hours that H and our team have put into supporting the development of his language and processing skills, his reading and writing skills, his social understanding, his self-regulation strategies, awareness and skills, and … (the list is long). This child has worked so hard to be where he is, and with the love and support of our family and friends and interventionists and therapists and neighbours and daycare providers and Community Living Services and therapeutic riding and doctor and play therapist and speech and language pathologist and school teachers and education assistants and pediatrician and cub scout leaders and support groups and social play groups and even our dog, he has made amazing developments.

If you don’t look back – you might take for granted how far you’ve come…

_________________________________________________________

30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism, (2011)

About these ads

About Leah Kelley

Leah Kelley, MEd., Educator, Parent, Speaker, Social Justice Activist. Writes blog: 30 Days of Autism. Projects support social understanding & neurodiversity. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in ASD, Aspergers, Autism, Diagnosis, Goals, Intervention, interventionsist, label, language, Parent, Play Therapy, Social Thinking, Speech and Language Therapist, Teacher and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

8 Responses to Looking back and next steps: the power of pause

  1. Margo says:

    I am a strong believer that it takes a village to raise a child. We need to build our village well.

  2. “we felt he would benefit from an additional full year of preschool. We thought it was far more helpful for him to be the oldest child in his class by five weeks, rather than the youngest by 11 months.”
    That’s what my parents did to me. Then my friend ended up being a year older than me anyway.

    • Leah Kelley says:

      Hmmm, funny thing… I guess that was perhaps meant to be. I am curious, if that was frustrating for you? I also wonder if there might be a difference between girls and boys with this. H really seemed to need another year to wave sticks about and enjoys a certain freedom, before settling into a classroom.
      We spoke to many, many parents before making the decision to wait the year for H, admittedly, most of them educators. We could find parents who had regretted not waiting and whose children had struggled, but we couldn’t find a single parent who had given their child the extra year to play and bond, etc., and in retrospect though it a mistake.
      However… I didn’t speak to any adults who had experienced this. Hhhhmmm… definitely something to consider and ponder… but I think for H it was the right thing. He was eased into the transition with so much more support than he would otherwise have gotten, and too we had more knowledge and understanding so we were better able to advocate and help others understand his experience.
      He does his schooling through distance ed now and his dad, The Amazing Craig, is his home facilitator. Because of this the ages of his friends are in many ways irrelevant. We are able to support H at a pace that is right for him and we try to be very responsive and honouring to what he conveys to us about his needs.
      I suppose there may come a time when H tells us that he thinks we did the wrong thing with waiting the year… or something else. I hope he is comfortable sharing this…

      Thank you so much for your comment, E :)
      Leah

      • Growing up, I *always* felt like I was too old for my grade, intellectually and socially. My closest friend was a year older than me, the kids in my class bullied me relentlessly, there were no supports, and I was bored to tears in the classes. It was absolutely not the right thing for me, and in fact, I recently got my mother to admit that she agreed with me on that fact in retrospect. I think I’m in the minority, though. My extra year of preschool didn’t prepare me any more for socialization, and it only kept me behind. Now in retrospect, I don’t know if starting kindergarten a year earlier would have changed much, but it might have. I doubt it would have put me in a worse situation socially or academically.

        I have been (and am really comfortable being) the youngest person in my peer-group for most of my life. I prefer to be younger than my peers, because they both respect me for my brain (hence the term “peers”) while also accepting me for my less mature quirks (like the giant stuffed animal collection that is next to my bed, or my tendency to get super duper excited and jump and flap when I start talking about my special interests). Even just 1 year of age difference was all I needed: for me, kids were more accepting of my quirks because I was “younger”. It was the people who were supposedly “my age” who made my life hell. Even now, I’m the youngest in my graduate school cohort. I’m the youngest in my group of friends, and in my lab. And I don’t mind that at all. It’s actually much better for me.

        And as I become older, age doesn’t seem to matter nearly so much anymore. When I TA, often, I’m one of the youngest in the classroom, but it doesn’t matter anymore. I supervise and mentor students in my lab who are younger than me, and that’s fine. I don’t yet have “peers” younger than me – though I expect that by the time I do, it won’t make so much of a difference. But being the oldest in my grade certainly didn’t help prepare me for that.

        Sorry, I’ve now written an entire essay here, and it’s probably not really coherent… but in the off-chance that it is, my bottom line is: in my personal case, waiting a year wasn’t good. But I think that’s an exception, not the rule.

  3. Leah Kelley says:

    Thanks… I was curious… and frankly – I think the thoughtful comments on a blog are a huge part of what makes it interesting. So, thank you sharing your experience and perspective. I always appreciate that, and you bring up some interesting points about the acceptance of someone younger. Keep writing :)

    PS… I still have/love stuffed animals too

    • 1funmum says:

      I saw this and I just wanted to say hugs to you both. We as parents try our best to make the tuff decisions. We pray they are right. Sometimes we get it all wrong and sometimes we are bang on. We had to make so many hard choices for our boys. Somehow I hope they will forgive me if there were some bad ones in there, and understand that some were made cause I really felt that it was right at the time or that the advice I got made sense at the time. We try so hard to say we know best but there is so much we have yet to learn about ASD that our professionals and our present systems that lead us through the paths of life may even help us to make decisions that may seem wrong later. You know hide sight is 20/20 lol. I’ve made some choices for one son different than the other but I based it on ability. So 1 year back is not such a bad one cause some kids need it. Some kids have high IQ and have ASD, some kids have learning issues and have ASD, so you can make a decision based on that too. Here’s hoping we can make the right ones and that they will be the ones that matter!

  4. 1funmum says:

    I really loved this article. I have to say “wow how far we have come” sometimes. It seems like yesterday my son was two years old. Now look at him go. Well look at them both go I should say. Having two boys has been one amazing ride. I love how you describe what it’s like in Canada and some of our process. When I read other blogs I often am taken back by the systems in other countries. The responses almost baffle me because I live in a country with health care. So I do have access to a speech path and OT. But the wait lists are so long. You do have to fight for ABA service, because every child isn’t considered for the treatment. We are lucky we have the service, we are. We couldn’t afford private therapy all the time. So we braved the wait lists. We were crushed with the aging out process. All the services start ending at 5. My youngest was almost 4 when he first got diagnosed. Every class or service we got I’m grateful for, but I wished they never ended until we needed them to end. Thanks though for writing this because I do think back and think we’ve come a long way baby! We have more distance to go though.

  5. Leah Kelley says:

    Thank you for taking the time to comment and share your thoughts and experiences. Yes… I agree that there are so many assumptions made about the importance of early intervention (which of course is true) but these assumptions can be somewhat neglectful of the ongoing needs of our kids as they become older. This happens at age 5/6… and there seems to be a realignment of the services needed to reflect that these children need ongoing support – through the school years and very often into adulthood. I think that service drops so substantially denies what we now know to be true about neurological development and neuroplasticity. With support our kids are able to make amazing gains. In a perfect world this level of support would not be confined to early intervention… but extend to those in need of services regardless of age.

    I am grateful that in BC we have autism funding – I am cognizant that this is in place as a result of the work of parent advocates and advocacy organizations. In BC this drops considerably when the child turns 6 – with the assumption that the school will be providing the services required. Unfortunately – because of a lack of capacity and resources it is often the situation that these services are not available. The needs of the system simply over-reach the capacity to meet those needs.

    There is definitely still work to do to advocate for the needs of our kids – within the school system, with the government, within society. I guess we had better be ready to grab that torch and carry on supporting our kids and ensuring their future is one full of hope and possibility.

    Our kids are counting on us!

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