… from the bungalow

Where’s My Village?

31 Comments

Last night was rough. On the one hand, F (oldest child, special needs) didn’t wake up and immediately start banging on his door. On the other hand, he did lie there crying and whimpering for about 5 minutes before one of us decided to go check on him, and as soon as I opened his door, he started screaming.

Sadly, this is not unusual. It just hasn’t happened in a while, so it feels like a step backward. When you’re woken out of a deep sleep and suddenly faced with screaming, it does something to you. You go into a sort of fight or flight mode. As a parent, you find yourself wanting to help, but it gets really frustrating really fast. I couldn’t really say just how fast. It’s kind of a blur now. It’s a sort of panicky, angry feeling. Time slows down, your heart rate increases, your head starts to buzz…

Ever been in a really heated argument with a partner? The kind that gets you so worked up you start shaking? You feel attacked and you attack back. You combat yelling with even louder yelling. Something in your brain tells you that you need them to see it your way; you need to overpower them, need to control them. My friend Mike who works with battered women could tell you more about that. But most of us, I’d wager, have had feelings similar to this.

But have you ever felt this way toward your kid? When you argue with another adult, you know they can handle themselves. You’re peers; it’s a fair fight. But a 7-year-old kid with a disability? Makes you feel like a bully.

As much as I try to be patient and calm and understanding, things still build up. Eventually, I reach a breaking point. A parent can only be hit, bitten and screamed at by their child so many times before they lose their shit. Thankfully, I knew when to walk away, and Karin was there to take over. I was so angry. I went back to my room and screamed into my pillow. I hated myself and my life.

And as I laid awake for the next hour or two, it was hard not to think of myself as a complete failure as a parent. I felt tired and weak and sick. I thought about how, as much as I care about him, F doesn’t really need me, specifically, but any adult who would take care of him and play with him. But then, there really aren’t many others who would.

Then I thought about how, just a few hours earlier, I had been there to comfort S (middle child) when he fell on his arm at the playground. He didn’t break anything, but he was so scared and hurt, and all he wanted was to sit with his dad for a few minutes. That little bit of cuddling and soothe-talking was all he really needed. It made me feel some sense of self-worth again, and I was able to go to sleep.

We’ve all heard the phrase, “it takes a village to raise a child.” So where’s my village? He’s in school part of the day; that’s one aspect of the village. My ex-wife’s parents are helpful, but can never be as helpful as they’d like to be, living 90 minutes away. And their moral support means a lot; that’s another aspect of the village. But there’s no respite. No one to take him out when he’s restless. No one to come over and play with him. That’s a pretty sparse village, if you ask me.

And I get it. I’m no one’s best friend. I’m not the best uncle. I’m not the best at giving of myself to others. I can’t blame people for not wanting–or even knowing how–to help. But at the end of the day (and throughout the night), I–am–spent. I can’t always reciprocate favors, or even friendship for that matter. Sorry.

I’ve given up asking people for help. They usually can’t or don’t know how or simply don’t want to because their schedule can’t be interrupted. I suppose I could pay people to come play with my kid. But there’s still an issue of teaching someone about F. What he can eat, what supplements to give him at what times, how to change a poopy pull-up on a 7-year-old boy, what his signs mean, how to help him calm down in the event of a melt-down and so on.

Parenting, special needs parenting in particular, is tough. No, it’s more than tough. I can be really fucking terrible sometimes. But as hard as it is, it can also be so simple at times. There are those moments of peaceful ease–like comforting a crying boy who fell on his arm at the playground–that make the hard times seem OK. I guess all I can hope is that the simple and good outweigh the difficult and awful.

Finn at the park

Advertisements

Author: Chris

A dad with a self-evaluation complex. Also a music therapist, college enrollment administrator, and hippie-nerd.

31 thoughts on “Where’s My Village?

  1. Chris, you know it happens to us all, and it’s particularly difficult for parents with special=needs children. We’re a different species it seems, because our priorities are a little different. While every parent may put their child first, our kids need us 24/7 even when we’re at work and they’re at school. We have to be able to say to the boss, “meltdown, be back” without another word – and find a way to keep our jobs. An understanding supervisor is essential, but also supportive co-workers who don’t consider it a burden to cover a little.
    We’re not saints, Chris. We are a special breed, yes, but really, we’re just parents like everyone else. It is hard being on our own with a child that just isn’t “normal” and can’t change because it’s in the chemistry.
    It hurts us that our kids will always be chastised, and it’s our job to make sure they are prepared to handle society.
    Don’t beat yourself up. You are a great father. Think about all the good things you’ve done to help Finn adjust to society. Think about how much better off your little guy is because YOU are his father.
    Also, take a break once in a while. Go ahead and find a babysitter, have him/her spend a bit of time with Finn, just to become friends and so he can get used to this new person in his life.
    I have to get going – just remember that you are Finn’s champion, and that you are human too. You are a great father, and don’t let yourself tell you different!
    All the best,

    • Thanks, EmmaJewel. Other SN parents get it, and it helps to know we’re not alone. We just need to work harder to take care of ourselves. I know it was just a rough night, and these things happen, but I’ve been feeling pretty beat up these past couple of days. I was able to catch up on a little bit of sleep. That helps a lot. I have a couple of “comfort movies” that I tend to fall back on when I’m sick or depressed (Clue, Back to the Future). I think I’ll watch one of those tonight. 🙂

  2. My heart breaks when I read this and it makes me want to cry. I have lifted up Finn in prayer and taken it to the Throne of Grace and believe God heard every word. May the Lord bless you with patience and unconditional love for Finn every moment of the day and help you and give you strength for every situation to come. I feel all these emotions right now and just want you guys to know I love you and you are great people no matter what life throws your way. Hang in there, things get better and grow with time.
    Hugs

    • Thank you, Claire. Your understanding and support mean a lot. You and Dan are good people and I’m glad to call you my friends. Wanna babysit? lol

  3. Chris,
    My heart goes out to all parents, especially those who have children with special needs. Parenting is not easy. I have said it is the most challenging and most rewarding job anyone will ever do. I cannot begin to know what you go through 24/7, but I want you to know I am here if you need to just talk about it. YOU ARE A GREAT FATHER. It’s okay to be angry, upset – feel the emotions. First, you aren’t angry at Finn…you’re angry at the hand he and you have been dealt. Life is not easy…but you seem to enjoy and remember those special moments with all of your boys. They will help you get through it all. Don’t be afraid to ask your friends for help. Sometimes people just don’t know what they can do to assist.

    • Thank you, Sheryl. I don’t make a point of telling everyone that I have a child with special needs, and I realize that people can’t help if they don’t know. I don’t want anyone to think I’m trying to elicit pity, first of all. Secondly, I don’t like hearing “what’s wrong with him?” and having to explain his issues. It’s not worth it. I do get angry at this lot we’ve been handed. But, like I’ve said, it’s also changed my life for the better. It’s a mixed blessing.

      I appreciate the support. 🙂

  4. Chris,
    Most parents do the best they can, but we are still only human. We all lose it at times. You were awesome to step away and let Karin take a turn with him. Knowing your limits is an excellent quality to have.
    Also, just so you know, you’re still the big brother I look up to, brag about, and wish I lived closer to, and you’re still my hero (ever since that day in Aunt Carol’s pool.)
    Obviously you aren’t going to be perfect, but those moments that feel like epic fails of self are the moments that we learn from and help us grow.

  5. Chris, the fact that you wrote this and have all these emotions about the situation makes you a good dad.
    From experience I can tell you that getting enough sleep is vital! And I think taking time to veg out with a comfort movie is definitely something you’ve earned.
    I wish I were closer so I could babysit for you. we rarely go out for similar reasons and when we do go, I try to plan it when treatments aren’t due and our boys won’t be eating anything so it’s easy for the sitter. I always feel like it’s an added burden for a sitter to care for Daniel.
    Just know that you’re doing an excellent job and it’s natural to get frustrated sometimes. As my mom frequently reminds me, “this too shall pass.”

  6. Hi Chris,

    This post is really powerful. My heart goes out to you because I can see how difficult it can be. I am also so very grateful that you are such a great, and strong man, for being a dad.

    Your journey is harder than the journey for other dad’s. And in some ways, that might make it more worth while. Although being at the end of your rope, exhausted and feeling like your failing is the worst feeling in the world, having that experience makes us better people. We become kinder, more forgiving, more understanding because of these hardships. And your son will get older, and he will have days where he smiles a lot, and that is what it is about.

    Enjoy the small achievements, and know that the hard moments make us better people. Better because we understand what people can experience and we understand what difficult really feels like. It makes us more empathetic, aware, and good. Channel those feelings when you’re near despair. It will help.

    Kell
    -The single, lesbian mother

    • Thanks, Kell! That’s exactly why I share these things. Just trying to change the world one heart at a time. I will try to remember that the next time I’m feeling so frustrated and desperate.

  7. This post made me cry. We so wish we could be there to help. We know how hard and frustrating it can be to care for Finn. We know you love him and we love you for wanting to be the best dad you can be to him. It was so hard for us when we knew we would no longer be able to help with the boys on a daily basis, and it still is hard for us.

    • I know your heart aches, Mary. And even though you and we aren’t in the same location, your caring thoughts and prayers are felt over the distance. That means something to me.

  8. I have been reluctant to respond to this, but I am building courage. There is so much to say, but let me begin with this. A divorce is tragic for kids. The parents separate and the child can no longer live in a household with both parents at the same time. In the beginning, Christopher, it was just you and me and Finn. Other people told us to basically “suck it up” until there was a diagnosis. Then it got a little better. Now, though, there’s four of us in this game. The household where Finn attends school is always going to be the one that takes the brunt of the hardship, no doubt about it. We and Finn have been blessed though, by this “tragedy” of divorce. We now have a village of four parents, rather than two. That’s twice as much as we had before. Let’s keep being creative, keep asking the universe for more solutions. Maybe we can turn it into a village of 4×4, then a village of 16×16.

  9. I have to add this—the way to get what you want is to appreciate what you have. I think you are right to ask, where’s my village? But then we must also answer that and be fully grateful. So thank you to all the very generous and loving grandparents, the sisters, brothers, aunts, uncles, nieces, nephews, teachers, bus drivers (see other post), teaching assistants, doctors, nurses, etc. Let’s breathe in and accept their generosity and love fully, allowing them to help in all the ways that they do. Then let us exhale our exhilirating gratitude. That will bring us more of what we need, I’m sure of it!

    • I do agree with you, Colleen. And it doesn’t always feel as desperate as it did when I wrote this post. But it does sometimes feel that desperate, and it seems impossible to be grateful in that moment.

      What’s magical to me is how people and resources pop into view when you least expect it. I’ll be honest; I haven’t been feeling like there’s much of a “we” lately. When we do communicate, it’s productive and positive to be sure, but our lives demand our attention. But then, as I’m reading your response to this post, another person from my past responded to a message on Facebook, which clarified a faulty perception I had and it was a huge relief. It was a very simple exchange, but enough to show me that we’re not stranded. It only took a minute of feeling grateful for the people in our lives before another one popped up.

      So to that end, I am so very grateful for the support and love shown by aunts, uncles, grandparents, sisters, brothers, nieces, nephews, teachers, bus drivers (especially bus drivers, haha), paras, doctors, nurses, friends, partners, exes and those unnamed or yet unknown. You’re all getting a mental high five or “good game” style slap on the butt, as appropriate.

  10. I will add, Christopher, that it was you who taught me about the process of manifesting our desires. Thank you for that!

  11. Dude this is so powerful. I’m glad you reposted it since it’s the first I’m reading. I didn’t have the best weekend of parenting with my daughter. A lot of impatience and snapping on my part. She’s not special needs. So you, once again, put things in perspective for me. Thanks for that.

    And as I stop making this about me, let me just say that I hope writing serves as a catharsis for you. A way for you to vent these frustrations so when you have these moments with Finn you are in that moment and at your best. Easier said than done, I know. You have my well wishes and my prayers as always. JDM

    My daughter is not special needs but I know it would take my last shred of pateince to deal with that.

    • Thanks, JDM! Perspective is so important. I’m honored that I can provide some for others.

      Absolutely, this blog is cathartic for me. I was just telling Colleen that this kind of transparency–near full disclosure–is as much for me as it is for others who may feel similarly. And for dads like yourself who just appreciate a little perspective now and then. 🙂

      Writing like this makes me a better dad and a more self-fulfilled individual in general. Thanks, as always, for reading and commenting.

  12. Thank you for writing this. I don’t have a special needs kid but I do have 5 little nut bars living under my roof, and while I love the little buggers, I feel like screaming into my pillow at times too. So I feel ya there.
    Even more than empathy, I feel guilt. It is so easy to say “I have 5 kids, I can’t go do…a, b, c or d for you…or you or you.” This article reminded me that I’m not the only one, my life isn’t special or different than most in so much as we all need each other.
    Thank you.

    • Thanks for your thoughtful comment, Sarah. We’re spread thin a lot of the time. Don’t feel guilty. We do all need each other. Sometimes we’re in a position to offer it up, and sometimes we need to ask for it ourselves. But we have to be willing to offer *something* when the people we love need it the most.

  13. This is a great post. As a widow and cancer survivor, my village has dwindled to less than a handful now that my teenage daughter is battling debilitating fibromyalgia and bipolar disorder. Immediate family is 90 miles away and the grandparents are elderly. People rallied around my husband with his terminal cancer diagnosis and then me with mine only months before he died. Yet now that our daughter is ill, I feel like I’ve used up my life’s supply of favors and help and am hesitant to tell people what she is going through.

    I’ve learned that some people do not wish their lives to be tarnished by the bad luck we’ve been given as if socializing with us could make the cancer/fibromyalgia/bipolar somehow contagious. The ones who are truly in your “village” will come to your aid when you ask. The ones who aren’t will come up with every excuse under the sun not to when you take them up on their empty offers “Let me know if I can do anything”. Truly thanking the ones who’ve helped is also important.

    Although some will prop me up with “You’re so strong! I know you’ll prevail!” I get tired of being the Only Parent and just want to lean on someone once in a while instead of going down this road alone.

    • Mama Lioness, it sounds like you’ve been, and are still going through a lot. I’m sorry to hear about all of these difficulties. I know what you mean, though. It seems like people will only tolerate so much “neediness” before they get tired of helping. And I get that to an extent. Sometimes our needs are bigger than what folks are willing to take on. That’s when we have to look for professional help.

      It sounds like you’re tired, feeling worn down. Please don’t give up. I’m not sure what I can do, but let me know if there’s anything I can assist you with. Sometimes others can make connections that we can’t see or aren’t aware of.

  14. Nothing ever doesn’t change, but nothing changes much. Wow. Was this only 4 months ago? It feels like years.

  15. So many things I liked about this article. Your honesty, your fears, not only for what you perceive as your own shortcomings, but your fears for your son as well, really stand out to make this a heartfelt and poignant piece of writing. Parenting is tough (and I am not a parent to a SN child, I can’t imagine how much tougher that makes it). A lot of us are lacking that all important village, for whatever reason (for us, it is living abroad), and frankly, it sucks. Keep writing.

    • Thank you, D. The timing of your comment is perfect, actually. Just yesterday my wife (F’s step-mom) said that she’s not sure how much longer she can deal with the nightly wakings. It’s a lot to ask of his biological parents, let alone his step-parent. I’m still not sure what to do about it, though.

      • Chris, I’m sending positive thoughts your way. I’m an agnostic, so sending prayers would be hypocritical to the nth degree. Hoping that a few nights sleep (bad pun?) a little more bearable. If not, I can heartily recommend wine. And shoes (maybe for your wife more than you). I don’t want to sound flippant, for what you are dealing with is about as far from flippant warranting as I can imagine. But sometimes a little bit of humor (one can hope) goes a long way. Best.

        • Positive thoughts are great, thank you. We’re getting there. I actually had a student (where I work) yesterday say, “This job must be incredibly stressful. You should meditate… or drink.” I had to laugh because she’s right. I’ve been saying I need to meditate more and drink less. Thanks for the thoughts.

Reply away!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s