Confession #19 I Still Worry About the Future.

Not a day goes by that I don’t wonder what the future will be like for our son.  Like most parents, we dream of a good education, a good job, family and joy in life for our children. We certainly had that in mind.  When he was younger we even dreamed of a football career based on his build and size; maybe make the NFL, take care of his parents… Even the BC  Lions coach when our son was 4 took one look at him and said, “Call me when you’re 19.” But that’s not likely to happen when your child doesn’t do well at competitive sport and is tender hearted. But we can dream! (Well, I dreamed that for him.  My wife… not so much; especially after watching the movie, Concussion.)

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courtesy pexels.com

Sadly, dreams and reality are not always in the same hemisphere for our son. And while I have fully accepted that, I still inwardly hope and pray for that miracle breakthrough. Instead, we usually get breakdowns.  A couple of weeks ago, a planned med change went awry and it took a little while to recover.  “We think your son should stay at home for the next couple of days” was the decision from the school – not made lightly, I might add, and we as a family agreed it was best for everybody.  We even had a long, large group meeting with school, counsellors, psychiatrist and others to talk it through where a poignant question was asked, “What is the IEP (Individual Education Plan) goal?  Is it eventually a full Dogwood or just school completion?” It was a setback just when things seemed like they were progressing.  And it made me wonder all over again whether the goal of parenting would ever be accomplished.

In a previous post, I reflected on the question of the goal of parenting posed by our son’s current psychiatrist the first time we met. My answer was, “To raise a child that can cope in this world.”  He was surprised by my answer and told me in his opinion I was correct.  Too many people focus on success, happiness, love, and what have you.  I just want my son to survive in the world on his own. To be able to cope.  To not be bullied, taunted, profiled, or unemployable.  We’re working on making that happen and getting good wrap around support for the journey, but I still worry sometimes.  And sometimes I worry a lot.  And sometimes I just enjoy the moment, lost in the thought of the love I have for him.

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courtesy pexels.com

Don’t get me wrong; Saying I worry doesn’t mean he doesn’t have great moments that make us proud in the here and now.  The other day we were beaming when another parent of a child in his school told us, “There aren’t many kids at school that will acknowledge my son, but yours always does.”  Heartbreaking and heartwarming all at once.  Heartbreaking for the other parent whose son has Down’s Syndrome and doesn’t have a lot of playmates at school.  Heartwarming because our son is tenderhearted and compassionate and a friend to anyone without judgment.  Definitely not a football player.  Not even The Blindside kind of football player with the protective instinct.  (Those who know our son, I know you know what I mean when I say that!)  Today he participated in the district track and field meet and coped with it very well.  We’re proud of the effort he gave.  And as many have pointed out, our son is sharp, quick witted, hilarious and fun to be around.  And those are true a lot of the time.  Just not all of the time.  Every now and then we get to see Mr. Hyde.  And coming this summer when we resume the attempt at a med change, we may see more of Mr. Hyde than we would like.  Then again, the med change might be the best thing to happen. We won’t know until we get there.

I still worry about the future.  Is that wrong?  I don’t know.  It’s not that I don’t trust God, or I don’t think we’re getting the help we need, or I don’t think he will ever learn to cope; I just worry.  I think that’s every parent’s prerogative.  And it’s every parent’s right too.

*end confession*

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Confession #18 I Don’t Always Get “It”, But Today Might Be Different.

It has been a while since I lasted posted; much has happened, mostly positive, as our family continues to receive help in a variety of ways, and I haven’t posted anything mostly because I haven’t had the time or energy.  The truth is, I want to be an expert and pass on great advice through this blog, and tell you “this is how we helped our son” but I don’t always have the answers.  I am trying to be a good parent, but I don’t always do a great job.  I worry about our son’s long term well-being, and I probably always will.  To be sure, there are moments when things are going well but then there are those other moments that knock you off your pedestal and bring you back to earth.  It’s part of the learning curve of being a parent.  We’d like to think there are experts in the field of parenting that can magically help us but the reality of each family’s distinct issues, character and circumstances makes being an expert an impossibility.  Our psychiatrist even said in a recent session, “Dr. Spock is an idiot.”  I got a good chuckle out of that.  The point he was making is we do our best as parents, but there is no perfect system/idea that fits every circumstance, and there are no guaranteed outcomes.

apple-applications-apps-607812Here’s the problem: there are a lot of self-proclaimed experts out there thanks to the proliferation of social media that gives people a voice on every topic from soup to nuts.  And that includes “experts” who chime in on adoption issues, bi-racial blended family issues, and parenting in general.  Usually the thing you read from those “experts” is “you’re wrong/a lousy parent because ______________” but every now and then something comes along and gives really good advice.  Today I came across one of those moments through an article from a blog I follow.  It puts the right words to things my wife and I have experienced, learned, and are still learning, that gave me some hope that someone actually gets it and one day I will as well.  The article is titled, “Your Journey Will Change When You Understand Trauma” and comes from a blog called Confessions of an Adoptive Parent.  This. Article. Is. Gold.  Everything resonated with me.  The main takeaways include how I not only view my son, but all kids differently as a result of understanding how trauma has adversely affected my son, and how I need to be a stronger voice in advocating for others.  And while this was not new – my wife and I have been experiencing the precise change referred to because of an understanding of our son’s trauma without knowing what that specific trauma is – it does put into words better than I could ever write the very things we as a family have been experiencing.  I encourage you to read it whether your kids are adopted or biologically yours or you just want to be a great aunt or uncle or friend to someone.  Maybe the world would truly be a better place if we just learned a little compassion and understanding.

At best, parenting advice is more like meteorology.  A weather forecast does a pretty rain-rainy-umbrella-17739good job of telling you, for the most part, what the weather will be like today based on observation and understanding of the dynamics and circumstances in the atmosphere but it is rarely, if ever, precise.  Sometimes the forecast completely misses the mark.  Often it is fairly accurate.  But every now and then it gets it right.  For me, the article on trauma is like the rare forecast that gets it right.  And I’m thankful for it.

I still worry about our son.  I worry about his long term well-being.  I always will.  In fact, I worry about all my kids!  (Our son used that phrase yesterday as if we had a quiver full of kids.   Two is all we’ve had!  And we love them both and care and worry equally.)  That is what a parent does.  I don’t always get it, whatever “it” is, but today just might be different thanks to the words of another.

*end confession*

 

Confession #17 – Bell Let’s Talk.

As a family, we are grateful for the resources for our son we were able to access during a compressed period of time.  It’s not that “all of sudden” mental health issues magically appeared.  The evidence was there for years.  My wife saw the signs.  Like a stubborn, crotchety old man, I was really slow in believing her.  I was unwilling, she was relentless in trying to knock on doors and get help.  And it was her relentless pursuit and a compressed period of crisis last summer that led to a situation where we got the help we needed in a miraculously short period of time.

Part of the problem was the community we lived in at the time was small and somewhat isolated, and help wasn’t always available.  Or, it wasn’t very good.  Visiting paediatricians would come to our community, see our son (who has always been large) and would have a hard time looking past his size rather than hear what we were saying about symptoms and issues.  (Or should I say, hear what my wife was saying.  She’s the real hero in this, the momma bear that wanted to fiercely get help for her cub.)  We even had one paediatrician calmly say, “I’m going to write something on a piece of paper you should look into and consider for your son that I think will help.”  It took everything within us not to leap across the room in anger and lash out at the doctor that had the audacity to simply write, Canada’s Food Guide. It was as if the doctor was saying, “the problem is your son is fat.”  There was a good support group my wife found in that community that tried to help parents of kids with brain difference issues, but that only brought momentary, periodic relief.  Real help was still needed.

I confess that eventually I figured out my wife was right all along.  She was talking, but I wasn’t listening.  She was talking, and wondered if others were listening.  We eventually connected with a really good RCC who counselled my wife and I via Skype, and saw our son in person.  He was incredibly helpful (and a fellow Christian) and took us through a journey but knew he could only go so far with the help he provided.  He even mentioned this thing called “P1” he thought would be helpful for our son which I had no clue about.

We moved to an urban location about 15 months ago and that accelerated our son’s issues.  We sought help, found a fabulous paediatrician, continued for a while with our outstanding counsellor, but then it happened.  All hell broke loose.  All the anxieties and mental health issues exploded into rages, violence, and destruction.  During the summer he ended up at BC Children’s Hospital, eventually admitted to CAPE (Child and Adolescent Psychiatric Emergency) and we were worn out, at a loss, and wondered what would happen next.  We walked on eggshells constantly, trying not to poke the bear.  It is amazing how much strength a child with mental health issues can manifest during a rage.  He became a semi-regular outpatient at CAPE.  Our hearts were heavy with grief.  We cried a lot.  And then it happened.  As my wife arrived to visit our son at CAPE the psychiatrist and social worker met her and told her that there was a space at P1 and our son was going to be admitted.  They kept saying over and over, “This never happens.  No one goes directly from CAPE to P1.  There is always a 6-8 month wait (sometimes longer) because there is limited bed space.  This never happens.”  Our faith tells us otherwise; miracles can and do happen.  We may not always experience them, or at least we may not recognize the miracles for what they are, but that day we did.

Since then, our son has been better.  Oh, we still have bad days but nowhere near what we experienced last summer.  He is on medication that helps regulate his mood and we all attend counselling and have a psychiatrist continuing to work with us.  I know there will never be a time when our son is “out of the woods.”  I can only hope and pray that he will cope well enough in life.  In the meantime, we continue to talk about his mental health and wellness in a transparent way because that’s the first step in removing the stigma.  We also continue to knock on doors and seek help where we can because that’s the next step.  And there is so much more that could be done in the area of resourcing so we need days like today, Bell Let’s Talk day, and take advantage of the opportunity to break the silence around mental illness and support mental health because in all likelihood there are more people in all of our lives and close circles of family and friends who struggle silently.  More needs to be done – much, much more.  But at least for this moment, voices will be heard.  I pray many more will experience practical help as a result.

*end confession*

Confession #16 Sometimes No News is Good News.

A friend recently contacted us out of concern, noticing there hasn’t been a post in a while (a little over a month) and thought either things had gone terribly wrong over the holidays or things were great.  The truth is, we survived.  We had contingency plans in place just in case things would get out of hand, and while the excitement and crowd of family at Christmas and New Year’s dinner did trigger stressors for our son, we survived.  Even during the Christmas Eve service at church, when our son’s mood elevated to high yellow and dangerously close to the red zone (we use the zones of regulation language a lot to describe situations and emotions) we managed to make it through without any scars. We didn’t get burned (literally, since there were candles, or figuratively.) There were no major blow ups.  We didn’t have to leave the dinners early.  The closest we came to Christmas disaster had nothing to do with us as the oven at my in-laws’ decided to die, but thankfully it happened after the turkey was done!

newspapersI suppose this all falls under the category of no news is good news. I didn’t have anything I felt compelled to write about on this blog.  It’s not that things are perfect.  They will never be perfect.  But we are learning to make the most of each day, and handle each situation with grace, patience and with a lot of advanced planning and help from family, counsellors and medical professionals too.  And we are learning to take survival moments as victories.  So to say, “we survived” means we celebrate a victory.

But even with all the help, planning, front loading, disengaging when he starts to move into the high yellow zone, and strategies to cope in our own frustrated moments, we still miss the mark from time to time.  We still need rescue meds every once in a while.  That happened on several occasions over the past month.  But there is no need to go over that or dwell in those moments.  Those minor blips are just that – small things.  If anything, things are better.  Much better, considering where we were in this journey 6 months ago.  And for that we are grateful.

We know there is still so much more to learn and experience.  There will be more times air-balloon-balloons-birthday-42067of confession.  There will be milestones to report (such as the fact that today is our son’s birthday!) We are still knocking on doors and seeking resources and help in the areas such as respite.  We still feel like we’re swimming in water over our heads and drowning at times.  In fact, that’s when I usually post; Most of the confessions on this page are how we’ve blown things or what to do when we mess up, but this one is just a “Thank you, Lord, that you have sustained us and we have made it to another year.”  Thanks for asking, friends.  Keep on praying because we know so much more lies ahead.

*end confession*

 

Confession #15 We don’t ‘do’ normal.

normal family pillowWhat is “normal”?  According to the online Oxford dictionary it is defined as “Conforming to a standard; usual, typical or expected.”  As a family, we don’t conform to a standard.  We aren’t usual or typical and we don’t go out and visit people much anymore because the event rarely (if ever) goes according to typical or standard expectations.  A visit to the mall or even the library can bring out the worst in terms of our son’s reactions which are often anything but normal if the conditions or climate is just right (or is that ‘just wrong?’).  We’re already making alternate plans or exit strategy for our family gathering on Christmas Day, just in case. It’s not that we don’t want to be with family or love them.  It’s because we don’t do normal.  And we never know what to expect.

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photo courtesy Brigitte Tohm on unsplash.com

Last night was a typical example of our atypical life.  Our son had a meltdown because he was asked to do something he didn’t want to do (at which point many would say, “that’s pretty normal”) and then for two hours was obsessed with whether or not he would get pancakes in the morning.  I am pretty sure he said the word “pancake” over one hundred times.  That’s not normal.   My words don’t do justice to the event that we experienced as a result of his  inability to process anxiety.  There were moments he writhed on the ground and curled up in the fetal position mumbling about pancakes.  It was enough to drive me around the bend.  If our life was a cartoon I would be that character with a red face and steam blowing out of my ears because of the amount of times he asked about pancakes.  It really didn’t matter what I said, he was stuck and couldn’t get out of his spiral.  Normal just isn’t part of who we are or what we do.

The online Oxford dictionary goes on to give another definition of the word normal which says, “(of a person) free from physical or mental disorders.”  My son is not normal in that sense either with his various diagnoses and that makes life even more difficult.   It means that often times we can’t do the same things other “normal” families do.  It means aspects of all the other things the first 14 confession pages reflect on come back in play to one degree or another.  It means juggling emotions, big feelings, stuck moments, weariness, broken hearts, broken things, and who knows what else.  So when we don’t behave typically or respond in a way that conforms to a standard expectation you might have, don’t think too poorly of us.  We’re just trying to get by one day (and pancake) at a time.

*Sigh.*  I miss normal.  It’s a whole lot easier and expends a lot less energy.

*end confession*

 

Confession #14 The brain is complex (understatement of the century) but I wish it wasn’t.

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photo courtesy Jesse Orrico at unsplash.com

The brain is a complex organ that, among other things, controls most of the activities of the body.  Among the activities is the ability to process information and make decisions.  These are two things the R.A.D. brain cannot do in the same way the “typical” person’s brain works.  Case in point; This past Sunday our church celebrated the baptism of two individuals.   This brought up two issues.  Since it was a celebration, we were having cake after the service, which leads to: Issue #1.  Store bought cake has dairy.  Therefore, my son was already in a foul mood when he arrived because he knew he couldn’t have cake (he is highly lactose intolerant) and in his mind that is an injustice and offence to him personally.  We had planned an alternative for him (as we do for times he is invited to birthday parties) but it didn’t seem to matter.  His brain was processing things very differently.  There was no chance of redeeming the moment.  Instead we simply hoped to ride it out without too much fanfare.

Issue #2. I baptized a teen.  Why is that an issue?  Because my son thought that meant I loved that teen more than him and was replacing him as my son. Where is the logic in that?  As I said, the brain is a complex organ and I wish it wasn’t.  I wish everyone would think similarly but my son has a brain difference issue and cannot process things the same anybody else would.  Sadly, most people that don’t know about kids with brain difference issues think “what’s wrong with him?”  He simply thinks differently and we cannot expect them to see the world the same way.

As parents, my wife and I wonder aloud what the next 10-15 years might look like.  Or the rest of his life for that matter.  Whereas normally as kids grow up parents get to “relax” along the way in terms of parenting style, we know we are going to be raising a kid who will always need more assistance and direction and there might never be a time when we “relax” how we parent.  His brain difference simply won’t allow it.  I wish the brain wasn’t so complex, but it is.  I am We are thankful for the support we get along the way that helps us understand what’s going on a little better than before, whether counselling, articles, books, etc that teach about the issues, or people that just come alongside and provide comfort or relief or respite (see my previous post) because we know we need it.  If only my brain could help process all the info along the way.

*end confession*

Extra:  My wife and I have posted the following article on social media before and have had a number of friends also message us about it.  We are grateful for the concern.  I am posting a link for those who wish to try and understand a little better some of the different ways a child with R.A.D. thinks and why conventional ideas/theories for helping our son just don’t work.  Also, posting this link does not mean we absolutely agree with everything that is said… but there is a lot of good stuff!  The article is from the Institute for Attachment.  Here is the link: When People Don’t Get It.  Enjoy.

 

Confession #13 I choose hope.

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Photo courtesy Sven Scheuerer at unsplash.com

I have given up watching the news on TV.  It irks me too much.  Social media isn’t much better, but at least as I wade through social media I can choose the articles I wish to read and the ones I wish to skip.  I’m not advocating a life that ignores or picks and chooses what is news (although that is precisely what media does: selects what they determine to be newsworthy, not report everything that goes on in the world) but every now and then I’d like to hear good news or read something that inspires.  I came across one of those inspirational articles this morning on a topic connected to what this blog is all about and that is biracial adoption, written by K.J. McNally.  Granted, the article is more about the beauty of adoption and of the diversity of colour, a serious issue especially south of the 49th Parallel but it inspired me for the most part.  Sometimes it paints a fairly rosy picture of adoption, which is not always what happens, although it does give a hat tip to the difficulty of adoption by pointing out the exhaustion and cost involved (which I interpret as both financial cost and personal, emotional cost) in the midst of describing adoption as an act that reflects our redemption bought by Christ himself.  “If we didn’t need the Redeemer to save us from a broken world with sin and darkness, adoption wouldn’t be needed. But this world is broken: sometimes moms can’t care for their children. What a sacrificial and humbling request to be asked to love and care for the life of a precious child.” Indeed.  And while my blog often seems to be “woe is me” that is not the intent of my confessions page.  I could complain about things that go wrong but that’s not the intent of this blog.  It’s more about confessing the difficulties of raising an adopted child that has mental health issues and to know we aren’t alone in the struggle.

I attended a conference this week in which many of my friends and colleagues I haven’t personally seen in a while asked me how things were going.  I knew what they meant.  They knew the difficulties our family has experienced because I chose to share it publicly through this blog and allow people to enter in.  Every one of those sentiments was filled with love and hope.  If I hadn’t written and allowed people into the world of my experiences through these confessions, I don’t even think I would have attended the conference.  I certainly wouldn’t have had the conversations I had.  But what I discovered through those conversations is that a number of my colleagues have had very similar experiences.  They know they are not alone.  They wanted me to know I was not alone and indeed, I know I am not alone.  And that gives me hope in the midst of brokenness.

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Photo courtesy Ron Smith at unsplash.com

In the article I referenced earlier is a great quote that says, “Creation was the agent of diversity. Sin is the catalyst for broken relationships, pride, and racial supremacy.” As I said, the article is more about racial issues and skin colour and the beauty of diversity so that is the emphasis in this quote.  Now let me take that quote one step further and say that sin is the catalyst for all that ails us.  And that includes our mental health issues and illnesses.  Struggling with health issues and mental health illness is part of this world because of sin.  By faith I know with certainty that one day we will be restored and there will be no more sickness and sorrowing, but right now we live in this world of sin.  Knowing that – that we live in a world of sin that brings sorrow – could throw us into the spiral of despair… or it could give us hope.  I choose hope.  I choose hope because I know that my Redeemer lives and he has promised hope as a reality not a vague wish.  I choose hope because hope elevates my heart in the moments that seem overwhelming. I choose hope because it is a light in the midst of darkness.  And as a line from an old hymn suggests, “My hope is built on nothing less, than Jesus’ blood and righteousness; I dare not trust the sweetest frame, but wholly lean on Jesus’ name.”  That gives me the confidence I have to choose hope.

I choose hope.  Not a vague wish that things would be better but a confident reality that one day it will.  Until that time I will – I must – cling to hope.  And I urge others to cling to hope as well.

*end confession*