The Struggle is Real and You are NOT Alone

Summer is nearing its end which means my youngest is about to turn 7 and before we know he will be heading to 2nd grade while my oldest goes into his final year of elementary school.  Routines are ever changing and going with the flow is not the easiest for either of my boys. It is typical for both to show elevated levels of anxiety as routines drastically change such as school starting.  New kids, new teachers, new classrooms, different part of the school…..and the list goes on.  You may be thinking to yourself, all kids get nervous before school starts.  While that is likely true, it is not common for the "typical" child to exhibit the heightened levels of anxiety observed by children with ADHD and/or ASD. 

As I sit here typing my anxiety begins to increase just thinking about all the changes that are about to take place.  I know this doesn't help ease the boy’s minds nor keep them calm, so I do my best to take deep breaths and stay calm, positive and optimistic about the weeks ahead.  I reflect on the last few years of "school prep" and do my best to recall the things that eased my kids minds and prepared them for the new school year.  First and foremost, we always attend the back to school open house.  Easing the anxiety that comes from the unknown and brings up question after question after question until one or both boys are so anxious they have become too wound up to calm down without sending them to a "quiet place" to compose themselves.  Attending this yearly event is standard routine and allows the boys to get familiar with their new classroom, meet their new teachers and see which friends are with them for the upcoming school year.  All important things for kids with and without anxiety.

One of the most interesting things I have come to realize is that it is not just about change in routine that causes anxiety to rear its sometimes ugly head, it is about the fear of the unknown, the expectations the kids put on themselves regardless of how supportive, open, caring and/or understanding we are with them as they many times struggle to understand and/or learn new things.  Sometimes telling the boys they are doing a fantastic job or we are proud of them no matter what backfires and sometimes even creates a meltdown you would not expect.  What would cause a meltdown in this case?   Glad you asked………. I will use my youngest as an example…..for him the internal thought that he is not doing what they expect of himself.  Perhaps working on a math problem, he understood a few days earlier only to forget how to do it b/c while he got it when it was happening due to repetition, not practicing it for a few days made it escape his memory. 

For both boys, the struggle is real and while the highs and lows may hibernate for periods of time, they never disappear.  Each individual disorder brings on different behaviors such as meltdowns and/or episodes of silliness, goofiness, spastic and/or OCD like behaviors that last anywhere from 5 minutes to a few hours depending on what started the wheels spinning and what eventually triggered the wheels to come unhinged. 

Over the years I have wondered who would care to read or benefit from brutally honest posts on the events and situations we have encountered, our daily struggles as well as the mental and physical toll it takes on all of us. Would anyone believe what I write is reality? Could sharing what we go through and what we have been through help others try something new, do something different or at least reach out for support because they realize they are not alone?  The answer is YES.  There are many families that feel they are alone in their struggle to figure out what to do next and why this is happening to them and/or their child.  I will continue to pay it forward with my blog with the goal of helping others know that they are not alone, their child is not "that different" and there is a village of people here to support them.  All you need to do is stop listening to those who say things like this: If you disciplined your kid differently maybe they wouldn't act out; Give it time and your kid will grow out of it; We all have sensory issues and the statements go on and on and on.   If your gut is telling you there is something more triggering your child's actions and reactions go with your gut, let down your guard, be vulnerable enough to raise their white flag and yell "HELP".  I promise you won't regret it!

Daily Forecast: Somewhere Between Sunny, Super Goofy and a Category 4 Hurricane

The daily forecast Somewhere Between Sunny, Super Goofy and a Category 4 Hurricane, fits with the diagnosis which helps us understand some of the behaviors, however that doesn't mean things will get easier, in fact now is when the really challenging work begins.  Why? In part because there is still so much we don't understand about ADHD in general let alone how to best help our youngest deal with it.  You may be asking yourself how that is possible given all the years we spent figuring out how to help our oldest with his ASD, SPD diagnosis and I am humble enough to tell you that I asked myself that very same question. How is it possible that I don't have the tools to guide, support and help my youngest work through the confusion in his mind?  

While outwardly there are many similar behaviors exhibited, what is triggering them is quite different.  You see when someone is high functioning on the spectrum ABA services are key in "retraining" the child's brain by removing the scratches from a CD Rom and replacing them with tools necessary to function "like a typical" child both socially and emotionally.  Now reality is that the social and emotional differences between someone on the spectrum and a "typically developing" child will never be the same. It is true that with the right amount early intervention many people may never know what life was like before the behaviors were "retrained" from what once overpowered and overwhelmed this child.  What is also true is that many people will look at you cross-eyed when you say your child can't stand in long lines, has trouble when plans change or can't calm themselves down without you hugging them so hard you think you may break some bones.  Unless you are in it you really can't comprehend it.  You can certainly empathize with or ignore the behaviors BUT Please DO NOT judge them for it.  The forecast for our oldest was once the same as this post title and has since moved to Mostly Sunny with a chance of sarcasm and an occasional tornado.  This kid, whose meltdowns would last upwards of 3 hours on any given day is now an overachieving straight A student with a sassy personality, great smile and a heart of gold. 

On the flip side - ADHD is like trying to remove scratches from a record so that when you put the needle on the track the music doesn't skip. Those of you old enough to know what a record is know that it is pretty much impossible to remove scratches from a record.  This my readers is why all of the tools, tricks and tips I received from my "village and dream team" over the years wasn't working as we tried to guide my little one back to the "middle"(a state of calmness).  The title of this post (Daily Forecast: somewhere between Sunny, Super Goofy and a Category 4 Hurricane) seemingly sums up what it is like living with our youngest son. Since we are an all or nothing type of family, it is not shocking to me that he has all 3 possible components (inattention, hyperactivity and Impulsivity).  As hard as it is for us, it must be that much harder for him.  It breaks my heart to think about what it is like to be in his own head with all his overlapping thoughts, inability to focus or think before he reacts or struggles to retain and recall information he just heard but didn’t really listen. At the same time, he is inquisitive, creative, always wanting to entertain, sometimes sneaky and always adorable.  

About a month ago he came up with the idea that every night before he goes to sleep we recite our happy thought for the day which I love.  Now I am sure it began as a way to "avoid" going to sleep yet I love it none the less.  One night a few days ago, he began asking me questions on a specific topic. After asking me his 10th question, something I had answered many times before, I reminded him that we already talked about it and kindly stated the answer. This isn’t something new for him (asking questions over and over) but what came next was different.  He looked at me, put his hand over his eyes and mouth, shook his head and said mommy why do I have so many questions?  It was as though something in his little mind realized it wasn't normal to ask so many questions over and over and over.  For a moment, I was joyful that he could realize this for himself, but that joy quickly turned to sadness and concern for all he must be going through internally that he can't articulate or control. 

We know that ADHD is a brain disorder that interferes with functioning or development, yet the million-dollar question remains: So where do we go from here to best help him?  For now, we continue to work with the IEP team, the teachers, support staff and psychologist to figure out the best protocol for our son. 

If you or anyone you know has a child struggling with ADHD, I would love to hear about your particular situation, what you tried and what worked and/or didn't work.

Miraculous Transformation - Bath Time Tears To Swim Team Triumph

Yesterday afternoon I took a stroll down memory lane by reading through the last 5 years of my early intervention blog posts and stumbled upon something I wrote back in 2012 about our oldest son's struggles with something called Sensory Processing Disorder.  

Flashes of those days that began 5+ years ago are still clearly visible in my mind. Just as visible in my mind is the amazing transformation that has taken place since then for my oldest.  From bath time tears to swim team triumph, his love of the water is far from those distant memories I wrote about in 2012. 

An excerpt from the post called Our Bath Time Journey  - written April 21, 2012

My earliest memories of my oldest in the “big boy” bath consisted of him screaming bloody murder, grabbing onto the sides of the door frame with all his might, me fighting back tears that many times came streaming down my face and then once we finally got into the tub, he would do everything in his power to get out. He would scream, try to hit, scratch etc. and try to crawl over the tub. It didn’t matter what we did…a little water, a lot of water, bath toys, and bubbles….he still wanted out. After months of barely getting him into the tub he finally became comfortable enough to stand in the tub, just long enough for me to wash his hair and body off without screaming. As long as he was in and out in less than 1 minute we were ok.

Surprisingly or perhaps purposefully the memories of the above times are not present in his memory.  You may be wondering why I would make that statement, well let me tell you.  Our almost 11 year old has a memory like a Dolphin which means he may not see someone or something for years, yet when we come across that place or that person the memories come back.  Part of me has to wonder if he "blocked out" those times because they were too painful, too frustrating or just too tough for him to handle.  At times I am envious of my son and even husband because they don't vividly recall those times like I do.  Then again it is those times that now bring a huge smile to my face, pride to my heart and joy to my soul.  If we hadn't gone through what we did, gotten the support from our "villagers and dream team" who knows where any of us would be today.  Thankfully we don't have to know what that reality would be like and instead can look back knowing that all of the blood, sweat and tears have led us here where I am able to write about it, talk about it and be proud of the accomplishments.  Never in my wildest dreams did I think we would make this Miraculous Transformation from bath time tears to swim team triumph.  I bet some of you are wondering why I said We and not he, aren't you? 

Here's why - From day one it was a team effort.  It wasn’t up to my son to change on his own, not up to the behavioralists, the psychologist, the OT, myself, my husband nor the educators alone to "fix" him.  It literally takes a Village. 

An excerpt from a post I called It Takes a Village - written September 12, 2011

If not for the team behind me, I am not sure where we would be today. If not for the team along side of me now, I think I would be quite depressed and at a loss for what to do next. I am not sad, nor depressed nor feeling alone any longer. Instead, I am in a great place, feeling extremely optimistic about the future and the wonderful life ahead for our family and our kids. 

Ironically the very thing that triggered the complete fear of a bath tub filled with only 2 inches of water, eventually became the thing that led him to love swimming. A fear of drowning turned into a feeling of complete freedom just before age 5. Water became his friend as he took private lessons in our pool and learned to swim from the steps to the wall(short length).  Eventually gaining the courage to swim the full length of the pool, his swim coach tried her best to get him to breathe as he swam from end to end.  Much to her dismay, he did just the opposite; not because he was being defiant, just because he like the way he felt when swimming end to end under the water. We would watch as he stood at the shallow end of the pool, dove down deep into the water and would glide from end to end without taking a breath until he reached the far side of the pool; emerging out of the water with a smile of pure delight all over his face.

Swimming went from something we wanted him to learn to something he enjoyed and eventually the sport he wanted to master going so far as setting a goal to make swim team.  Over the next several years he took lessons weekly and even tried out for a swim team only to be told he was too good for the junior swim team, but couldn't make the main swim team because he didn't have his flip turn.   Given his determination and expectation to make it, this could have crushed him, but instead he got back in the pool and worked toward mastering the flip turn.  After weeks of private lessons with a lot of time focused on the flip turns, the forward motion continuing to make him dizzy and unable to complete the move he had a decision to make.  He could keep taking lessons OR he could join a different swim team that didn't require a 10 year old to do a flip turn.  He chose option 2 and what a great decision it was for him.  The team he chose had friends from school and the neighborhood and coaches that were fantastic, having just the right mix of encouragement and expectations.  His drive led him to attend every morning or evening practice, sometimes both in one day in order to improve his strokes and speed.  Did it pay off?  Sure did!  Every meet led to a new "best time" for whichever strokes he swam (mostly free and fly), heat winners, more ribbons than he has ever seen and to top it  off, the coach chose him to award with the medal for most improved swimmer in his age group. 

Summer swim season may be over, but his journey toward greatness doesn't stop here for this kid.  After a lot of anxiety filled conversations along with some pep talks, he decided to try out for year round swim and made the team!   He is dedicated to becoming the best swimmer he can be and knows that it won't come easy, yet he is willing to commit and work hard at it.  In my eyes he is the epitome of what courage and determination is all about. 

It took a village to get us here and it will take a village to keep us going, but rest assured we will keep forging ahead, moving mountains, adding to our village and learning from every new situation we encounter along the way.   

I encourage you to share this post with those who may be able to relate and/or benefit from our journey.