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PARENTING PERSPECTIVES

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Parenting a child with special needs one heck of a trip

By Alicia Strnad Hoalcraft

'I don't want to go to Holland!" I cried to my mom on the day that it sunk in that my daughter had special needs. My mom knew what I meant without further explanation.

She'd had the poem on her wall for years when I was younger — about how parenting a child with special needs is like planning a trip to Italy only to find yourself in Holland when the plane lands. You cycle through anger and disorientation before eventually finding the beauty in your unexpected trip.

I can't say that my own journey has been as poetic or as neat as that. True, I haven’t ended up where I expected and the emotions involved in learning about how my child operates differently than others her age were a whirlwind. Many days I've felt lost, stranded and so very alone. Even my spouse couldn't understand the depths of all my feelings — my life growing up with siblings who have disabilities colored my perspective as well as my own personal guilt about everything I'd done "wrong" in my parenting career that led my mind down dark paths of what my daughter's future could hold and how it would be all my fault.

My brain tormented itself with how I should have noticed this earlier, seen the issues and been more proactive. If only I'd seen the signs I could now see in retrospect, my daughter's life would be better. If only, if only, if only.

I'd lie awake in bed every night thinking about all the signs I'd missed, agonizing over moments that I told myself "should" have tipped me off to bigger issues. I “should” have realized she was dealing with more than anxiety. I “should” have gotten her help earlier. When things got really bad, I “should” have known there was more going on than just adjusting to the pandemic.

But I didn’t know what to do.

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But the journey has come with things I never expected — so many opportunities to show my child I'm on her side no matter what.

Alicia Strnad Hoalcraft

I was unprepared for the realities of a small child whose body could become so full of emotion that she would attack her parents just to get some of it out. I couldn’t predict her outbursts, anticipate what would frustrate and upset her, or figure out a way to help her calm herself before her brain and body were out of control. All I could do was hold her while we both cried, find us the professional help we needed, and make sure that she knew that I love her no matter what.

Because this hasn’t been like landing in Holland at all. There hasn’t been a moment where I’ve realized there are beautiful things about being in this place and settled into an acceptance of my new parenting destination. There are still days that are hard, days that end in tears and mornings that begin with whispered wishes of a calm and quiet day. There are still days that I wish I could parent the way I’d planned, that my daughter wouldn’t have to face these struggles or grapple with such big decisions so often. That I could hug my child close to me and tell her everything would be OK and feel more confident in my answer.

But that’s not what life has brought us. Instead of a trip to Italy or Holland, we board a plane each day not knowing what our destination is. There are tools I can bring with me, things I can do to help my family be equipped for the trip, but I can never be fully prepared for the realities of each moment until we land and learn if we’re in Siberia or Seychelles. Adapting is the name of the game for us because, at least at this stage, nothing seems settled for long. But the journey has come with things I never expected — so many opportunities to show my child I'm on her side no matter what; the chance to make friends who understand me and her more than I could have hoped; the ability for her and I to connect on a deeper level and learn so much about each other's thoughts and feelings. I suppose that's what the poet meant about finding the beauty of Holland, but I would be lying if I said I was able to feel that emotion all the time. I am blessed to have a wonderful support system (and the resources to ensure my daughter gets the care she needs) but that doesn't negate how very hard this has been on all of us and how much part of me yearns for my daughter to not have to experience these struggles.

But I don't regret who my daughter is. I love every fiber of her being, even in her darkest moments. There are struggles, yes, but she is also brave and kind and sweet and funny and clever and so, so wonderful. I love her fierce determination to figure out her own path, and I love how she uses her experiences to help other people, from explaining to friends and family how to handle "big feelings" to discussing plans to become a therapist for children one day.

I don't know what the future will look like for her or for me. I can't say if we'll spend the rest of our lives on this journey, alternating between tulips and tempests, or if things will one day be calm enough to be predictable. I can't promise my daughter — or myself — what tomorrow will look like. All I can promise is to be by her side and do whatever it takes to help her.

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