We can do better: Early Intervention

The last day of my son's first preschool year his teacher told me... Your son is doing better now.  I was not sure what she meant by that comment.  And it was delivered without any additional. information.  That was a VERY LAME and failed attempt at trying to say my son was...perhaps... not.... neurotypical.

Based on what I've seen and heard, many preschool teachers are not equipped or trained for this hard conversation. (In my case, it was his teacher's first preschool job).  Many preschools are afraid of  misdiagnosing or of being perceived as diagnosing, so they circumvent the business altogether.  At the same time some parents are often not prepared for this hard conversation (especially if it is their first child) and therefore don't want to hear it.  It can easily backfire on the preschool if not handled effectively.  So sadly, these poor kids get passed up for early detection and early intervention...far too often.

I'm no expert by any means.  But but as I understand it, these early years are the most formative for high functioning kids like mine to expedite improvements and 'training' for their neural pathways.  In other words the more support they get, and the earlier they get it...the more likely it will help them to develop 'tools' to address their challenges.  The good news is that there are early developmental and intervention support programs available, but a child has to fist be evaluated, diagnosed, and then enrolled into that system to be eligible for that support,  Presently, at least in Oregon, that is heavily reliant upon these difficult conversations and parental acknowledgements to happen.

We are one of the lucky families graced with that hard conversation early on, and grateful for it.  After that first year of preschool, we took our to son to a different Pre-k - and they recognized there was something different about him.  They didn't try to diagnose him and they were unable to steer us with what to do next.  We were left to figure it out on our own.....I'll save that story for the next post....

Meanwhile, I believe our community can do better. (I can hope!)  I envision a doable communications based program that would cast a net to catch these kids.  Perhaps other states do this already, but here's how I see it:   We give preschools the tools to conduct a basic standardized checklist or scored evaluation, with some minimal training. Not all that different in concept than the standardized reading or hearing tests.  We communicate to all parents there is a required evaluation to uncover if a child may potentially need some extra support or evaluations.  And, if muliple triggers are found -- they can opt to get their child further evaluated.   Standardized information could be provided to guide them to that next step and inform them of the benefits of early support.   This would create some basic awareness among all parents; some structure for the preschools to provide a critical service without diagnosing;  and initialize next steps to support these kids. 

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Get me to the school on time...

When teachers ask parents to do things, parents may not always know the reason why.  I was recently privy to a conversation between my son's teacher and another parent.  The teacher was asking the parent to try and get their child to school on time.  The parent basically didn't feel it was an appropriate inconvenience to rush their child to get to school. (I am trying to imagine that luxury, as it is such an effort to get my kid organized around getting to school each day....)

This particular class has a number of neuro-divergent kids (My child among them).   Many neuro-divergent kids work best when there is a routine schedule and minimal disruptions that can set them off track.  There is a domino-effect that happens, where kids can get disregulated, and then disregulate each other.   It can potentially upset the whole class for an activity or for the day.

Teachers may not always be able to explain the reason for a request they are making, particularly in front of their class.  This teacher feels it is best for the children and the ecosystem of the class to keep it going as smooth as possible by starting the day consistently.  And, as hard as it for us to do so since we drive across town, we do our best to honor that.  Boundless kudos to our teachers, who are the protectors of their often delicate ecosystem.  In my opinion, they should get all the support we can give them!

My Tribe

Why a Tribe?

Early on in my child's diagnosis of Aspie/ADHD, I was desperately lost and had no idea where to start in on helping my child.  A friend-of-a-friend-Mom, who's child was also neuro divergent, offered to meet with me.  Over a very long lunch she generously pointed me in the right directions, sharing her invaluable best tips and specialists for her son.  When I couldn't begin to thank her enough she told me simply to "pass it on"- just as she had done.  And from that day forward I have done exactly that.  I am trying to imagine how different my journey -- and my son's journey -- would have been without that meeting.

I made the decision to be an open advocate, rather than to maintain privacy.  I welcome questions.  When I come across a family with challenges, I try to share something about our journey that helped us.  I want to help them to feel comfortable asking for support, and encouraged about their own journey.  Folks can have a tendency to put to their head in the sand when it comes to recognizing their kids challenges, or feel overwhelmed, ashamed or out of control.  In my experience, the best thing for the child in our Tribe is to get them the support they need as soon as possible.  So anything I can do to support that path feels right to me.

This philosophy of "pass it on" has been more rewarding than I could have imagined.  It has helped me to realize we are a Tribe and the best way to do this is together.  I take my job seriously, even on the days where it feels so heavy that I want to stay in bed.  So, I share.  It helps me to focus on finding the light while helping others.   I've never regretted it.

Who is my Tribe anyways?

I will tell you who they are NOT:

• Those who take one look at my high-functioning kid and think we-parents are nuts.  They don't believe us when we tell them he is not neurotypical,  because they don't spend enough time with us in the places that trigger him, and don't have the experience to recognize when is a kid is working so very hard to keep things in check. (Eve family members may be in this category.)
• Those who've seen our child triggered and trying to keep it together -- and then decide for us that it is not so convenient to invite us along next time.  
• Those that quickly conclude that we as parents should be managing or disciplining our child differently - without any additional conversation or support to try and understand what is really going on.
• Those who judge because we choose to give our child medication so that he can be most successful in school, or because we allow our child ample screen time in noisy restaurants, or because we can't keep our home picked up when some days are total chaos.
• Those who judge because we choose to share that we are parents of a neurodivergent child. rather than keep it private.
• Those who are not accepting or accommodating of neurodiversity.  
• Doctors and providers who don't have the training to actually diagnose properly; or who treat and diagnose these kids based on a list of symptoms - without diagnosing them as individuals.  

Here is my Tribe, those who ARE:

• The beautiful, altruistic parents of neuro divergent kids who help other parents find their way.  
• The neighbor who graciously invited me in when my overly enthusiastic young child had unexpectedly run through her front door.
• My dear friends and family who continue to learn how to be inclusive -- even when it is not always convenient.
• The educators who accept that each child has something to contribute and each child learns differently.  And who seemingly tirelessly work to keep their classroom ecosystem regulated.  
• Embracing the accommodations we can all make to make life easier for those who are different. 
• Specialists that keep on plugging the pathway that moves each child further on their developmental journey.
• Respectfully asking questions about what is happening instead of coming to their own conclusions.  
• Recognizing my serious and intense role as a Mom of a neuro divergent child that is both conjoined with my child and family, as well as separate. It has become more of my identity now than my past career. 
• Reading this!

My deepest thanks to that Friend-of-a-friend-Mom - and to my Tribe.   You keep me keepin' on it!