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.
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.
This week has been a tough one. One of my boys has been discriminated against because of a lack of understanding of who he is, what his struggles are and what supports he needs.
I’ve been trying to wrap my brain around what I’ve been feeling this week. This situation could have been avoided had there been more understanding, more inclusion, more compassion, more knowledge, and less selfishness.
If people had taken the time, energy and effort to know my son…..to really know him……they would not have treated him the way that they did.
If they had looked for and discovered his heart and soul….they would not have judged his struggles as defiance or disobedience.
If they had looked for, and discovered his abilities….then his disabilities would have been overshadowed.
If they had looked for and recognized his intense desire for relationship and connection…….they would have been able to see beyond the anxiety and disregulation.
I keep coming back to this idea of “knowing” and of “being known”. I believe there is a desire in all of us to really, truly be known. Maybe that thought terrifies us….maybe it excite us…..
I believe that our biggest fear in being truly seen and known, is the fear of being rejected……of not being accepted. That’s what we, all, want…isn’t it? To be known and to be loved, exactly for who we are. I’m not saying that we should never grow or work on areas of weakness. Growth and Personal Healing are critical, but being loved and accepted for who you are is so important.
I know that this is one of my deepest desires and yet, if I’m completely honest……I’m terrified that if you truly knew me, that you’d reject me.
I don’t know why I think that.
I don’t think I’m a bad person. I try to be authentic, open, and honest. If you only know me online, I believe that I’m the same person in real life. I can be funny. I can be serious. I try to live with compassion and not judge. I want to exemplify love in my words and my actions. I don’t shy away from the truth, nor do I want to hurt people with it. I share about the good and the bad. I speak with way too many exclamation marks and periods……..just like I type!!! I find it difficult to speak without my hands, without using facial expressions, and my whole body.
I often feel like I’m too “big”…….too “expressive”…….too “expansive”……
I feel like I’m constantly diminishing my true self because my true self is overwhelming.
I LONG for connection and yet, I’m terrified of it.
And maybe this is why I feel SO strongly for my children…….I see their intense desire for connection. I see their yearning for relationship. I see their hunger to be known………and accepted……and cherished.
And yet, they are big……their personalities can be larger than life. They can be overwhelming at times. But I SEE them……I KNOW THEM!
I see their hearts.
I see their souls.
I see their goodness.
I see their kindness.
I see their compassion.
I see their innocence.
I see their love.
I see their passion.
I see their zeal.
I KNOW THEM.
And yet, they’ve been hurt….too many times!
They’ve been hurt because people didn’t, couldn’t or wouldn’t look beyond the struggles and disabilities to see them…..to truly KNOW them.
It hurts them.
It hurts me.
I believe that we miss out on some of the most precious treasures in the world, if we dismiss those who may be differently abled.
Maybe in really, truly seeing and accepting others; we too, will be seen and accepted………..what would our world look like then?
I cling to the edge of the cliff. The fingers of Darkness and Despair curl around my ankles, weighing me down. The continual rain soaks my clothing, adding to the weight; it makes it harder to hold on.
I dread the end of summer. Even as the days shorten and cool, I feel myself starting to wither…..just like my garden.
I could really use the sunshine and a beach, right about now.
It’s hard. I’m exhausted. My boys are incredibly difficult right now. We’re long beyond the October crash……this must be the November burn. Crash and Burn!
I’m sick of saying, “It’s hard. I’m exhausted.” I want desperately to connect and yet…I have nothing. I have zero energy to attempt connection. But without connection, I’m alone. So which is it…… it’s a losing battle.
Sometimes I feel that if I could explain what my life is like that you might get it…..But I’m realizing that unless you live it, you won’t fully understand it. I share bits and pieces but never the whole….it would be too much to handle. I know this because it’s too much to handle.
There is a certain amount of grieving. Grieving normalcy…..But mostly there is just soul crushing exhaustion. It’s like a cloud of nothingness with vague wisps of sadness and loneliness woven throughout.
I love my children and I hate how difficult they are.
Autism, ADHD, Anxiety…..Even though they are labels given to two of my boys, our entire family is deeply effected.
There is so much chaos. I feel like I’m constantly drowning. I manage to grab small breaths of air….never enough to breathe deeply and the waves crash consistently enough that I’m left in a constant state of panic.
There’s only so much space for panic and my two boys seem to have the corner on that market. Too often when I feel the panic rising, I stuff it back down with a shallow breath. As if I could control it….
There is so much guilt and shame and yet…..that’s one good thing about exhaustion…..somehow you can’t muster the energy to hold onto the guilt and shame. You feel it and it makes you feel dirty and worthless; but it’s too heavy to carry and there’s too much to be done….
So you drop it like most of the other balls you drop on a daily basis…..
You cling to the edge of the cliff and hope……you hope that you make it through another day. You hope that tomorrow will be better. You cling to the hope that seasons change and that this dark and gloomy season will once again give way to sunshine. You pray for wisdom, strength, and patience.
You pray for your kids to just hurry up and fall asleep so you can have a moment to breathe…..then you feel guilty….then you remember how much work there still is to do tonight and you drop the guilt as exhaustion takes over once again.
Imagine, if you would, a sunshine filled garden exploding with a riot of colors, sounds and smells. The colors are vibrant and exciting as they effortlessly clash and blend together. The perfume from the flowers and the wonderful earthy smell of the warm dirt and the grass fills your senses. You can hear the wind blowing and the birds chirping…..it’s an incredible experience. You feel calm and peaceful just thinking about that place……..
Now imagine that you are in that place…….but you have glasses on with grey, smudgy lenses; that you are wearing a backpack with 25 pounds of rocks inside that are weighing you down, giving you a headache and making your shoulders feel so tense and sore. Imagine that you have on heavy boots that make every step you take an extra effort; and you’re exhausted because you must. keep. moving. or something won’t get done. Imagine that you have on headphones and a crowd of people are shouting different instructions at you; and you feel that you must follow all the directions and manage to get everything done that they are requesting or demanding. Imagine that you are juggling but what you are juggling is fragile and if you somehow drop one, there are huge consequences………now imagine that this is every day 24/7 for as long as you can remember and as long as you can see…..You can sort of, almost remember what life was like before the exhaustion and the weight of the stress; but because your “now” is so overwhelming……”before” has become this idealized place that you no longer have clear access to and at times, you can feel very resentful of where you are at, right now.
I know that life is not that amazing sunshine filled, calm, peaceful place, all the time. But my life with special needs kids, 99.9% of the time, feels like the second part of that imaginary place……and it’s exhausting!
It’s exhausting, thinking about it. It’s exhausting, living it.
And with that exhaustion comes guilt, and more grieving.
I have special needs children and sometimes it feels like those children and their “special needs” are my whole world. But they’re not……
I have myself. I, way too often, put myself last and really have nothing to give but everything is required and I give – at a deficit to myself. I end up wondering what the long term effects, physically, mentally and emotionally, will be. It’s only a fleeting wonder, as I don’t have “time” to dwell on it.
I have a husband. He, way too often, gets the short end of the stick because he is an adult and capable of caring for himself. But with all that is required of me, there is very little to give to him, and I often grieve the friendship and intimacy that we could have, should have……..did have and I took for granted? We have a weekly date night (thanks to respite) but often we sit side by side, shell shocked over this life we are living. We attempt to connect, knowing that it won’t be this way forever; but he is my best friend and even though we are married, see each other every day, live together, sleep together….I miss him. And yet, right now, so much else, consumes our time and thoughts and energy.
I have 2 big girls who are becoming incredible women. I grieve the lack of time and energy to spend with them. I am so thrilled that they want to spend spend time with me. But I feel guilty when my initial thought is that I don’t want to spend time with them because I have nothing more to give. And I grieve……I grieve being the mother they need and want. I do my best, but too often, I’m scared that my best is not enough.
I have a 5 year old. And against all the odds, he seems to be neuro-typical……what some might call normal. I’m not sure what normal really is or even if you can actually say that anyone is normal, but he doesn’t have Autism or ADHD and he doesn’t seem to have any glaring learning disabilities, that we are aware of. He struggles a little with some anxiety and has a harder time with transitions (than I’d like). But, he really seems to fit in with what society would consider to be a typical 5 year old. It’s wonderful and bizarre to see him reaching milestones, remembering names, being able to read and identify emotions in himself and in others, being able to sit still and focus….. He could be my little soccer player or join a karate club…….but remember that description above…..I’m exhausted. And feel like I have nothing left to give. And I grieve…..
I desire friendships and relationships, but there is no extra to give. Everything comes at a cost. Sometimes the investment is worth it, sometimes its not….and it’s a huge juggling act to know when, where, why, and how to fit it all in. As a result, unless it’s someone who understands what I’m going through and is willing to be there when I can muster up the energy……friendships are sparse, fleeting and oh so shallow. But if and when you do find those people who get it…….it’s incredible. But then you grieve your inability to have as much time as you’d like. Sometimes, its easier to not know what you’re missing…..
So much of “special needs” parenting has this underlying thread of guilt and sadness woven through it. I might try to fit or blend in. I might try to “do it all”…..but I just can’t. There is simply too much.
And I grieve…..
I don’t think that Perpetual Grief is limited to special needs parenting, it can be brought on by any form of long term trauma like physical or mental illness, divorce, loss, etc……
Once again, my goal in sharing about this, is not because I’m trying to explain how hard my life is or that I’m looking for pity. I know there are others out there who feel this way and I want to let you know that you’re not alone. The journey of Perpetual Grief is not an easy one, but knowing that you’re not alone seems to help. It won’t make it all better, but it helps a little.
I also know that there are those who don’t understand. They don’t understand why I don’t do extra things. Why I always say, “no.” Why I have to weigh and measure how worth it, it’s going to be to do something that seems like it would be fun and exciting. I know that there are those who don’t understand why we won’t alter our schedule to do some fun activity because the “schedule” keeps things balanced and I’m too tired to try to allow for things to become unbalanced. There are those who don’t understand why I’m too tired, when I don’t do anything extra. Grief is a funny thing. You’re not always sad but it’s like a weight that sits heavy on you……and when it’s always around….you’re always tired.
I’m not sharing about the concept of continual and on going grief to gain sympathy or pity. But to bring awareness to a state of being that some may have no concept about. My life is not continually sadness and depression. There are SO MANY AMAZING things…..starting with the 6 most amazing people that I love more than life itself.
But, I am living this life that has been hard and there are aspects of grieving that I never seem to get beyond because certain situations are brought up again and again and again.
Parenting a child (or children) with special needs is an interesting endeavor. There is a certain loss of dreams and ideals that you come up against time and time again.
For many reasons, my 2 older boys – both of which have Autism, ADHD, Learning Disabilites and Anxiety, as well as Sensory Processing Disorder – have never done very well in group activities. Whether its the social aspect, or the inability to focus, the lack of verbal or written output, generalized fear and anxiety; or even the chaos, and sensory input from an organized activity.
We tried to put Jeremy in Karate, and Soccer when he was younger. The karate instructor was positive that he could whip Jeremy into shape…..and eventually asked us to leave when all Jeremy was interested in doing was spinning in circles while laying on the floor. The soccer league was specifically a no rules, just play league and we figured the lack of standing in lines waiting for your turn to do the drills would be amazing for him. We were excited to have him ask to be in net every week, until we realized that the ball almost never made it to the net and that he spent the majority of his time laying in the grass, looking up at the sky and rolling around. We attempted to put Josiah in a parkour class but after getting spoken to by the instructors because he wouldn’t stay in the lines and wait his turn, we removed him from that activity as well.
The only activity that has been somewhat tolerated has been swimming…..and I’m not surprised because my boys spend about 50% of their awake time in the the bath……It’s a sensory heaven…..the perfect temperature, perfect amount of pressure, they can float if they want, still play with lego, and can hide under the water and its so quiet.
Even so, we got notified by the swimming instructor, last week, that maybe Siah would benefit from private lessons as he struggles with listening to the teacher and following the rules. And I grieve….
I see parents all around me putting their kids in different activities and I grieve the loss of normality. I see parents sharing excitedly of how their child is excelling in this activity or that activity. Hear parents talk about how their child got a scholarship to this college or university and while I’m so happy for them and would never begrudge their child’s success…..
I grieve. I grieve because I celebrate differently.
I celebrate days when we have “only 3” meltdowns. I celebrate just getting my children to school……without tears is a banner day. I still haven’t been able to celebrate just dropping off my kindergarten-er and having him run inside happily. I celebrate days where the teacher hasn’t had to talk to me about an issue. I celebrate days where bedtime doesn’t take 3 hours from start to finish. I celebrate my children eating……something……anything……I celebrate when my child uses the bathroom without fear, tears and pain. I celebrate when we can find the “softy pants”.
But I grieve the loss of dreams…..the dream of normalcy…the thoughts and ideals I had of life looking a certain way. Of being able to put my son in soccer. Of having my kids involved in sports or an activity…..of having them excel at something.
And they do excel……just differently.
In the grand scheme of things, I’m raising my children to be kind, compassionate, understanding, aware…… and I think I’m succeeding. But that doesn’t mean that somewhere underneath it all, that a part of me doesn’t feel the loss…..
This past Sunday, neither of my little boys wanted to go to their class at church. I know that once they are settled, they enjoy themselves; but transitioning from being with mom and dad to being in their class has been so difficult. Sunday was no exception. We managed to get Judah settled – but he wasn’t happy about it. And Jon took Siah up to his class. He sent me the picture up above, saying that Siah was pretty pissed to be there and was refusing to join in. He was just standing in the corner, glowering at everyone.
He finally worked his way through whatever transitioning he needed to do and realized that he could “improve on” what they were doing for the craft. At that point, he quite happily joined in.
When I spoke with him later, he mentioned that getting a”list of what was going to happen” would help…………and that explained everything. He was feeling anxious and out of control. His need for security and comfort displayed itself as defiance and opposition. But the reality was that he was scared and insecure.
I suggested that maybe the calm Josiah needed to write the nervous Josiah a letter so when he had forgotten how fun class was; I could give him the letter so that he could remind himself…….because even if you won’t trust me, you’ve got to trust yourself, right?
He giggled for a long time about that.
But it breaks my heart to see him stressed beyond the ability to reason. He is such a smart, capable child as long as he’s not in “fight or flight mode”. Once he hits that…..basically we hold the course until he can come to a realization by himself.
And yet, the longer he stays in that space, the harder it is on him – physically, mentally and emotionally – and I hate that.
I grieve the loss of normalcy. I grieve the loss of ease. I was looking back at pictures from when I had only the older three kids and while life back then wasn’t easy….it was different. It seemed simpler. It wasn’t easy. Jeremy wasn’t an easy kid but he as only 1 of 3 and at that point I had no idea of the world of pain I was headed into.
I grieve the loss of self. I grieve the loss of competence and confident capability. I grieve the loss of innocence.
I feel like a part of me is stuck in that dark space of grieving. Like it’s been so long that grief has been touching me that it’s infused itself into me. Not overwhelming, just subtly changing……..winding tiny bursts of sadness here and there. Not enough to overwhelm, but just enough to never forget………