Category: ADD/ADHD

46

Dear 16 year old me,

You’re gonna be okay. These overwhelming feeling of insecurity and intrusive thoughts are part of a life long anxiety disorder, probably a chemical imbalance and you will eventually figure that out. You’re not broken or awful.

It’s okay that you’ve not had a boyfriend, yet. You’re going to find an incredible boy who will grow up to be an even more incredible man. You are gorgeous, smart and powerful. It’s okay to be a strong woman. Your strength will serve you well in the future. You don’t have to pretend to be something you’re not and who you are, is incredible. You’ve got this!

Dear 26 year old me,

3 kids, eh? You’re a rockstar!

That littlest one you’re holding?!? He is going to teach you more than you ever imagined was possible. You are going to learn patience and compassion, communication, persistence, gentleness, love, and so much more.

You’ve got a lot of life ahead of you and lots that I wish I could protect you from. You’re in for a world of heartbreak, trauma and devastation; but the flip side of all of that hurt is the most glorious awareness of grace and mercy. You are going to learn to love, have compassion and care for others in a way that will rock your world, in the best way possible.

That strength I mentioned earlier, it will do you well as we navigate these dark days ahead. You will survive. I promise. Even though it may feel like you could die from the pain and heartbreak, I can promise you that you won’t. You’ve got this!

Dear 36 year old me,

Can you believe that we have 5 incredible kids? Those 2 miracle boys born after all those losses…..AMAZING, eh? It’s a lot of work, but this second round of parenting is so much easier than the first round, isn’t it?

You thought the losses were tough but you’ve got another decade of unfathomable heart break. Between 3 years of Pediatric Cancer treatment, the physical, mental and emotional fallout from the treatment, mental health issues, trauma, school issues, and so much more – this is the decade that is going to really test you. Even though you will feel that you are walking a fine line between surviving and breaking, you will survive.

This is the decade that you learn just exactly how strong you are. Even if you wish you weren’t as strong because you’re exhausted and sometimes you wish it would all just go away or stop – you’ve got this. One day, one hour, one moment, one breath at a time. Breathe girl, breathe! This season won’t last forever.

Dear 46 year old me,

I truly wonder what this next decade will bring. I’d like to believe that the pain of the previous 2 decades will lighten up some. It’s been intense enough to last a lifetime. But the gifts that have come along side the pain have been glorious. In spite of all that we’ve been through, we’ve had the most incredible life and it’s not over yet!

You are wise! You are strong! You are brave! You are beautiful! Trust yourself! Trust your instincts! Believe in yourself! Believe that you have a voice! Believe that your dreams are valid and important! Believe that you can affect positive change in the world! Believe that you are a strong and powerful women. Know that your strength is one of your super-powers. Keep going to counselling! Keep reaching for inner healing! Have patience with yourself! You are a work in progress. You’ve got this!

Are we listening?

It was almost a decade ago.

She sat in her chair in a small room at BC Children’s Hospital ADHD clinic and calmly and quietly spoke to my child as if he knew and understood himself.

As if he, this frantic, frenetic child who couldn’t seem to slow down enough to eat or sleep or play appropriately or articulate well, could communicate the mysteries of his mind.

I don’t remember exactly what she asked or what he said. What I do remember is thinking to myself,

“She sees HIM. She really SEES him and in truly SEEING HIM; she’s giving him the opportunity to speak and to share from a space of being KNOWN. And in being seen and known, he has the permission and confidence to speak and be heard.”

This one moment is one of the many “pivotal” moments of my journey through parenting.

I remember the awareness hitting me so hard and fast that it was almost a physical impact.

My child, who I thought was an impressionable, immature being – a chaotic, unsleeping, hyper, frustrated, frustrating, exhausted and exhausting person……

I was shocked to find out that even at 10 years old, my child had insight, wisdom and knowledge of what he was feeling, dealing with and going through AND he could communicate that with us , even though it seemed he was only reactionary and impulsive.

I remember him sharing something profound about the way his brain worked, how his body and mind felt; and what he wished he could change.

I remember looking at the Dr incredulously while she carefully wrote down a few notes and thanked him for his input. She had a few suggestions for him and us. She spoke to him like his thoughts really mattered. Like he was “the patient”. Like he had some say over his life.

She wasn’t ever patronizing. I truly believe she saw and heard her patients and really believed them and cared about their input.

This moment changed my life forever. Jeremy was 10 years old when we met Dr. Jokhani and I am forever grateful for her care and support of him; but the impact of this encounter radically changed my understanding of how we interact with our kids.

Too often, we think or assume for them. We assign them thoughts or words based on what we see. But what we see, what they feel, what they perceive, what they know and if they have suggestions, desires or wants gets laid aside.

I’ve been asked how it is that my kids seem so self aware and insightful. How I’ve taught them to be able to share so eloquently? Is there something special about them?

The reality is that I’ve not taught them anything except maybe to trust themselves. Too often what we need to do is JUST ASK and then WAIT! We need to really listen to what they say. Listen to truly understand.

As an example, when Jeremy was asked to share what it felt like inside of his brain when he was at school; he explained that it felt like his brain was moving so fast that he couldn’t catch any of his thoughts. It felt like everything was buzzing so loud.

But when he took meds……everything got quiet and slower; and he could hold one thought until he wanted to put it down.

It might sound childish and simple, but it’s a brilliant explanation of the ADHD mind both on and off of a stimulant.

Mind you, he did all of this explaining, with his back to us while playing with LEGO.

Our children are going to share like children.

  • Will we stop long enough to ask them questions?
  • Will we listen long enough and with open enough hearts and minds to be able to really hear them?
  • Can we trust them to know themselves?
  • Will be give them opportunity to make a mistake and to teach them that mistakes are just a part of learning?
  • Can we give them the safe spaces to practice communication and advocacy?
  • Will we allow and champion opportunities to practise this skill?

I believe that we, as a society, win when we teach our kids self awareness. That we win when we teach our kids to self advocate. That we win when our kids believe that they have a voice worth listening to – when they believe that they have value and worth. That we win when our kids believe that they are valuable not in spite of who they are but because of who they are.

I’ve seen this play out hundreds of times with my younger sons…..starting at early as 3-4 years old.

Our kids are never too early to be heard, seen and known and loved.

**************************************

I’d love to hear about a “pivotal” parenting moment for you?

What Can You Recognize?

It’s Summer time and I have memories of VBS in the local churches in our community. I remember sweaty hot rooms and making macaroni art, singing songs and snacks! I remember memorizing verses for stars. I LOVED to win the stars. Not to compete against others but to see just how many I could get. Summer camps both short day camps and overnight camps were a highlight of my summers.

I just picked up my 9 year old from camp after he bolted. He just ran away.

Jude deals with Anxiety and Trauma from living with Siblings with Autism. Life can be very chaotic, unstable and uncertain.

He struggles with doing things that seem like they should be fun; normal “kid” things And as his parent, I feel like I’m constantly balancing accepting where he is at and encouraging him to stretch his wings. I’m constantly balancing his emotional and mental capabilities and trying to encourage growth without wearing him out completely.

As his parent, it’s exhausting. Either I’m doing activities with him (like Grade 3 or Summer Camp) which means that I don’t get anything else done. Or I’m trying to encourage him to participate, which often means I’m hanging around close by; still unable to take care of other responsibilities. Or we stay at home and avoid “outside activities” and I can usually get some of my responsibilities accomplished.

Sometimes, he needs the complete break so he can recharge……like an older rechargeable battery that can only hold so much charge and takes longer to absorb the charge. He wears out easier than typical kids and requires more time to recharge.

Going to a high energy camp with a LOT of kids is exhausting so why do we do it?

It gives him another opportunity to practise and grow and to see how much stronger he is compared to last year.

It’s also SO important to live in community. We were not created to be alone. And even though it may seem easier to do it alone, it’s not. Loneliness is soul crushing. We are built for love and acceptance and interaction.

So even though it’s hard and awkward and too often we feel judged by people who don’t understand or “get it”; we believe in the value of community and so we do our best to connect, in ways that are meaningful for us, and yet don’t overwhelm or wear down us down.

I held back tears when I picked my son up. Tears for how hard it is for him. Tears because I’m exhausted. Tears because of shame. Tears because of guilt.

I told him I was SO excited to see him. And we carry on with our day.

The next time you see a kid bolting, understand that there’s a good chance the child is panicking for some reason.

Realize that they need support, understanding and help.

Recognize that kids do well, when they can.

Recognize that behaviour is communication.

Recognize that when kids are in panic mode they are more likely to “act” than “speak” and it’s ups to us, as adults, to lend our calm and to not add chaos.

Recognize that you can be a part of the solution or you can add to the problem.

Recognize that the child and their parents, most likely, have limited emotional/mental/physical resources in reserve.

Recognize that you can be a life line in both the child’s and the parents life.

Recognize that Shame and Blame help NO ONE!

Recognize that “villages” and “community” are SO desperately needed.

You are Not Alone

I don’t know if it’s the loneliest road but being a parent of a special needs or disabled child is definitely a tough road to travel.

Gratuitous picture of Mac because why not….

I’m not talking about my child’s journey, at this exact moment. I’m talking about my journey as a parent of a disabled child…….multiple children to be exact.

I was talking with another parent this morning. It feels so dishonourable to admit that parenting a special needs child is hard because you are supposed to love and cherish and champion your children.

Which I do!

But I also spend a huge amount of energy advocating on their behalf. Unless you live this life, you really have no concept of what it’s like. This is one reason that I share so openly about our life; so that those who have no clue, can have some clue, if they want, about what it’s like to live with and parent disabled kids.

I also share so that other parents who are going through similar experiences can know that they are not alone. I know this because I have many parents share with me……..”I thought I was alone until I saw your post and then I realized that I’m not alone.”

Too often, we believe that we are the only ones going through this. And it’s not until someone is brave enough to say, “This is what I’m going through and it’s ugly and messy and beautiful and courageous all at the same time.” that we realize that others are on this journey with us and we are not alone.

And that is the beauty of community.

We all need community. We need to know that we are not alone. We need to know that others have walked the paths that we are walking. We need to know that others understand the exhaustion and the frustration and the pride that we feel for and with our children. We need someone to understand that we live within chaos and that there is still beauty within the chaos. That growth still happens within the chaos. That love grows within the chaos. That life continues within the chaos.

This is why I share. This is why I lay my soul open so others can draw strength and courage from the knowledge that they are not alone. That there is a connection within the loneliness and isolation of parenting special needs kids.

We all want to be loved and accepted, not in spite of who we are but because of who we are.

I see you.

I recognize you.

I validate you.

You are worthy of love and acceptance.

You are more than all you “do”.

You are doing your very best and that’s enough, even if it doesn’t feel like it.

YOU are NOT alone!

Navigating Educational Trauma as a Parent

Like anything in life there are sides to every story…..often multiple sides.

My post about Parenting Trauma within the Educational System seemed to hit a chord with many and I believe its a huge opportunity for conversation.

Within the Education System we have:
– kids who are traumatized
– parents who are traumatized
– educators, administrators and support staff who are traumatized

There’s a lot of trauma.

And……no ones trauma outweighs another. Every trauma is valid and some how we have to figure out a way to navigate a system filled with traumatized people, who are doing their best; and have the end result be a safe, inclusive space for all to grow and thrive.

It’s an unfortunate reality that, at any given time, our best may be super messy and awkward. Just like our little ones……some days, their best may be flailing around on a floor screaming. And that “best” is better than lashing out at another person. As humans, we have the opportunity to come along side and support those who are struggling.

Navigating trauma that has been inflicted on your child, is brutal. While there are times that people intentionally inflict trauma on others; I would say that the majority of trauma within the education system, is not done purposefully. People don’t go into education with the intent to harm kids.

Regardless of whether its intentional or not, trauma happens and when we know better, we must do better; which is why awareness, and communication are so important.

When trauma is triggered, the brain shuts down and communication and learning are impaired. This is true for kids and for adults.

I’m aware that I hold trauma in my body and mind regarding my children and the Education system. When triggered, I try really hard to pause before I react and to filter what I say and feel; or to find someone who can help me regulate But, there are times when past trauma is triggered and all I do is react.

When trauma is triggered, my brain goes into overdrive. My thoughts immediately start racing. At the same time, everything is a bit of a fog. My only goal is to protect my kids, at any and all cost. Unfortunately, there can be fall out. In moments of fight/flight, I may say things that rational me wouldn’t say. I can feel my heart racing and my body tenses. It’s not a pleasant feeling. I can literally feel the surge of adrenaline washing over me as I prepare to fight or flee.

It feels awful!

And I know that many of you have been there; and many of you are there.

My hope, in posting about this, is to bring awareness. Awareness to parents, awareness to educators, awareness to people who have no clue that this happens. I believe that with awareness, there is opportunity to talk, to communicate more openly; and ultimately, to grow and heal. In order for relationship to build and grow, there has to be communication.

I believe that the “end goal” is that we all want children to grow and learn and be successful.

In the midst of trauma, its easy to loose sight of that. The Fight/Flight instinct kicks in and we go into Battle Mode.

As parents, its beneficial to know if we carry trauma regarding the Education System. We need to know that the trauma taints everything we see, hear, say, experience…….

I’m not saying that there haven’t been “wrongs” committed.

Because there have been “wrongs”. That’s a fact.

But how do we, as humans, work together towards growth and relationship. Especially, when we have a child (or children) in the middle of it all.

How can we communicate respectfully with each other?
How can we hear each other?
How can we come to an agreement with each other?
How can we be partners rather than adversaries?

I know this is a lofty ideal.

I don’t know exactly how to make it happen. I don’t believe that what’s currently happening is working; and I want to be a part of a change.

Here are some of the ways that I hope to affect change.

Awareness – I think speaking about trauma and other issues; and sharing openly and vulnerably is important. I can’t tell you how many people message me saying they “get it” or are going through the same thing. They say that it feels so good to know they’re not alone on this journey. That means the world to me because I know that I’m not alone.

Relationship – I have purposed to build relationship on a peer level with the people in my kids lives. This doesn’t mean that we are “besties”. But, I want them to know me as Patti, the person; and I want to know them as the person they are. Making relationship critical, means that when I’m feeling hurt by something or someone, I have a bigger chance of “pausing” before I say something hurtful to another human. It’s easy to rail against a system……and less easy when you really see the person in front of you.

Respect – If I had to choose one building block to build my life on, it would be respect. I want to act and speak respectfully regardless of how I’m treated. I’m human and fallible but this is one virtue I make every effort to embody. I believe that if you are a respectful person, as a general rule, you will be treated with respect. If you can continue to be respectful, even in the midst of difficulty, you will gain more respect. It’s just the way it works. That doesn’t mean you need to be a doormat and let people walk all over you. Part of living a respectful life is also having self respect and knowing what to accept and what to let go of; but speaking the truth with respect is powerful.

I’m not a policy maker. I’m not a name or organization within the system. I’m just a mom trying to affect change within my realm of influence; and these are just 3 of the ways that I hope to affect change.

I do, wholeheartedly, believe in the ripple effect. We have an opportunity every year to bring awareness, and respect to our relationships with the educators/administrators, parents and support staff that we come in contact with. It’s my hope that awareness, respect and relationship are the legacy that I leave behind, with every grade that my children pass through.

Don’t ever think that you don’t have any influence. We do have influence. Be a force for change. Be a positive influence and see what happens. It may take time, but I believe that it’s worth it.


Parenting PTSD, the Educational Version

I recently received an email that sent me into an absolute tailspin.

I’ve just realized that with all the info blacked out, this email could be for any one of them, because all 3 of my boys have the same initials. All 3 have IEP’s and “school teams”.

Do you see anything wrong or even remotely threatening or negative about this email?

Nope! Neither do I and I asked for a meeting. Regardless, as I lay in bed, my heart started to race and the thoughts in my head sped out of control.?

What if they are upset with my child?
What if they are upset with me?
What if they are going to tell me that it’s too much effort to support my child?
What if they chalk his issues up to bad parenting instead of trauma?
What if they judge me?
What if they are tired of trying?
What if they put it all back on me to solve and fix?

And the thoughts spiral out of control until I’m choking back the tears and barely holding myself together.?

{I know that these are “what if’s….” and I really don’t want to live in the world of “what if’s….” because….what if it all goes amazingly well? And really what does it matter if someone thinks poorly of my child. I know the truth. But truth doesn’t always vanquish the trauma…..at least not right away.}

This is Parenting PTSD, the Educational version.In the past, I’ve had administrators and teachers say those things about my child. I’ve heard those things said to me, said about my child, and said when it was presumed that I wasn’t listening. To hear those things, destroys a piece of your heart, mind and soul. It breaks your ability to trust, to really even hear at all, let alone with an open heart and soul.

It is devastating to hear that people feel your child is too difficult, too much effort, or just not worth the effort.

While I know that currently, we have people on our teams who actually care for my boys, that past wounding, that TRAUMA is still there. It’s runs deep and it excruciatingly painful.

As a parent of a child with extra needs, you are already soul crushingly weary but usually with no real option or opportunity to rest. You are almost always in fight or flight mode. If for some blessed reason you aren’t there, it only takes one second to be activated …..sometimes when it’s not even necessary.

I’m extra exhausted right now and pretty close to the edge of tears, most of the time.

I’m not alone in this, either. There are thousands of parents, with kids who have challenges, who feel traumatized from dealing with the people within the education system.

We are desperate for people to truly see our children for the wonders that they are. We are desperate for someone to share all the good and amazing things that they see about our children. We are desperate for people to look beyond the challenging behaviour, to see what our children are saying, to listen and really hear their hearts. To champion them into becoming all they they can be and even more.

We are desperate for people to see our children as human beings; and as valuable, worthy and important as the typical kids.

On our end, it takes the courage of showing up and being there even when you don’t know if it will make a difference or if you’ll get hurt again. It takes vulnerability to share your hurts, your ideas, your successes and your failures.

If you work within the education system, know that you have parents and children who are incredibly triggered right now.

show love,
show compassion,
show mercy,
show grace,
show acceptance.

Invest in relationship.
Foster communication.
Build trust.
Be Respectful.
Be a life line.

And the benefits will be innumerable.

But recognize that there is Trauma and it’s not going anywhere soon.

Be a part of the solution, not the problem.

Executive Function

Ya’ll I’m exhausted. It’s been a week FILLED with one thing after another after another and while none of those individual things are critical, the combined weight is enough to drag me under.

So today, I’m going to share a post that I read yesterday. I think awareness is so important. You can’t truly understand something, unless you’ve lived or experienced it.

BUT……you can learn. You can try to understand. You can lay personal bias and judgment aside and really seek to understand.

Jon and I have said for YEARS, that our kids have the capability to be wildly successful in life but that they would totally benefit and need a Pepper Potts to administrate things for them.

Those of us without Executive Function Deficits can often organize and structure our own lives. We can juggle all the balls, even the boring ones. But for those of us who have reduced Executive Function, certain tasks can seem insurmountable.

It doesn’t mean that people with Executive Function Deficits are stupid. They may be “Different, but they are not Less“. I will harp on that until the end of time. It’s so important. We all have strengths and challenges. It’s a part of being human. we should never belittle others for their challenges……EVER!

Here is link to an incredible article by Mair Elliot on Executive Function and how frustrating, and unpredictable it is to live with Executive Function Deficits; how much effort is required on a daily basis, and how it can affect quality of life even though the individual may be intellectually capable.

Please read this article with the intent to learn and understand.

Different, not Less!

Facing It Head On

I’m having a hard time settling down tonight.

We had an appointment today regarding one of our kids. This is not our first time having an appointment like this but I don’t think they get any easier.

As parents, we want to see the best in our kids. We talk to other parents about their achievements. A typical parent may brag about their child being on the honour roll or a sports club their child was invited to be a part of. They may share about the recognition their child received in Cadets or Guides.

Special needs parents want to share about the wonders of our children, too. But our pride may be in the fact that our child spoke at 8 years old, or learned to tie their shoe laces at 14, or shared a beloved and sacred item with a sibling. We are ecstatic (and often terrified) when they get invited to a birthday party or for a play date .

Would you even consider bragging that your child got invited to a birthday party or for a play date? It’s ok if that would never cross your mind, it just means that we function in different circles, on this great earth of ours.

Here’s something else that’s different…..

Parents of typical kids will probably never experience this situation, and if that is you, count yourself blessed. It’s a special kind of hell to go to an appointment and speak and share about all the ways your child is missing the mark. To spend a couple of hours talking “down” about your child. To fill in form, after form, after form, about all the things your child can’t do, and specifically doesn’t do, well.

You almost have to disassociate from yourself to do this. But you MUST do this, in order to get your child the supports they need.

So you do it, regardless of the fact that it goes against every parental instinct to cherish and protect. You dig out all the dirt and ugliness; and you lay it out there for all to see.

It’s hard because it’s not like you don’t know that there are things your child struggles with, but when you put it all together in one pile, at one time…..it’s overwhelming; and frankly, soul crushing.

That pile of crap in that picture up above……it’s all the stuff I swept out from under my couch. Some of it is garbage. Some of it is useful. Some is necessary. Some was misplaced.

It’s easier to know it’s there; but to only focus on what’s in front of you. If the room looks okay, then it’s good, right?

Its when you sweep it all out into the open that you are faced with a challenge. You can start sorting and do the work and effort that’s required to place things in order. You can throw it all out. Or You can sweep it back under.

You can’t throw “this situation” out or throw “this” away; and ignoring it doesn’t work out well for anyone. There really is only one appropriate option and that’s to put in the time and effort and to “sort things out”. As a parent of special needs children, those are two things that I have the smallest reserves of……time and energy!

But I will get up tomorrow and try to figure out what the next steps are because that is what you do when you love someone with all your heart and soul. When your goal is to help them succeed and be the very best “them” that they can be; you do whatever you can do.

If you have children with disabilities, you’re either nodding in agreement or horrified at what you may soon be asked to do.

If you don’t have children with disabilities, know that your friends, acquaintances, those parents……..they go through things that are tough. They do things that no parent ever wants to do; and they do it so they can afford their child the best in life. But those parents, they are tired. They are often overwhelmed. They may feel like they’ve betrayed the wonder and beauty of their child, in the name of “support”. The hardest part is that that there are no guarantees. You may not get the supports that are needed and then it feels like it was all for nothing; and that’s REALLY tough.

Parents of typical kids, I’m sharing so you can know…….so you can be aware…..so you can show compassion.

Not pity. Not ever pity.

But awareness, seeking to understand, and compassion are huge gifts that you can give us parents of kids with differences.

Take Aways…….

  • Be aware
  • Seek to understand
  • Have compassion
  • Be kind – Always Be kind!

Advocating Hell

Advocating for your child is it’s very own unique level of Hell. The mind games alone are enough to make you walk away and not even try.

I’m trying desperately to help you understand my child and to see that he’s not deliberately trying to be difficult and defiant. While at the exact same time, I want to not lose your support, regardless of the fact that I may be challenging you to step outside of your preconceived understanding. I am desperate to not come across as a helicopter mom, trying to make my child’s life easy. I’m hoping that you “hear and see” me as an expert on my child with valid input and not as an overprotective, un-objective parent. I want recognition that I come as a well versed peer and not to be on the receiving end of some bias towards me or my child.

I view children as wanting to please, as wanting to do their best…and when their behaviour deviates from what we’ve come to expect…..I question, “What is their Behaviour Communicating to us? What are they struggling to verbalize. What are they struggling with?”

Siahs struggling at school. His behaviour is one of escaping into a safe world…..classically autistic. Rather than clamping down on the behaviour, I believe that we need to figure out what he’s struggling with. Once we can help him……he will have energy to once again rise to the level of success, we have previously seen and even surpass it.

Until this situation gets sorted out, I worry tha we are stuck in discomfort.

  • make (someone) feel uneasy, anxious, or embarrassed.

I dislike discomfort but I dislike my child struggling even more.

It’s hell.

We, special needs parents do not enjoy ruffling feathers. We do not enjoy pushing the bubble. We do not enjoy messing up the status quo.

We would give just about anything to just be typical and never need to spreak with you. But we don’t have that option and so we carry on. Please don’t judge us for that.!

Hear us! Really hear what we have to say!