It takes a village

Andrew and Eleanor turn three!

Andrew and Eleanor turn three!

Ironically, a part-time job of mine in college was working for an agency that provided respite services for families caring for a disabled family member.  I helped care for people ranging from ages sixteen up to their sixties; none of whom would ever live independently. Most were older and ambulatory. Seizures and varying levels of intellectual disability were common. The youngest, at sixteen, was the outlier and most disabled; like Andrew, she would not be alive if not for the medical intervention and technology available today.

Working in the homes of different families allowed me a glimpse of what caring for a disabled family member, particularly for the very, very long-term might look like. As a young and naive college student, I came away from the experience with the following big ideas:

(1) Caring for a child with disabilities will significantly increase the odds of marital discord/divorce, incredible sibling dysfunction, social isolation, and chronic sorrow.

(2) If the child is not going to be institutionalized, families need to obtain help. A lot of help. They can’t do it alone or they will burn out and their family unit will fall apart.

Disclaimer: I know there are many exceptions and lots of marriages and families don’t fall apart. I also realize that obtaining any help, especially quality help, is a choice that many families simply don’t have.

But working at the agency left quite the impression on twenty-two-year-old me. More than teaching me about compassion, it left me fearful. And suffice to say, when I found myself in my very own disabled child situation, it felt like some kind of an awful punishment; my worst parenting nightmare had come true. And I freaked out.

But I’m doing much better now, thank you.

I am doing much better not because I am amazing, inspiring, a super mom, or hero. The crude truth is that if I do appear to resemble any of those things, it is because I am extremely fortunate to not have the entire scope of Andrew’s care fall squarely on my shoulders.

With the dramatic stabilization of Andrew’s health on the blenderized diet a year and a half ago, caring for him has been the the smoothest it’s ever been. But it’s all relative. Because, still, the best analogy I can come up with in terms of what day-to-day care for Andrew is like is that of a colicky newborn–but so much harder. Andrew doesn’t sleep through the night, is fed and burped every two hours when awake, spits up, has temperature regulation issues, cannot stool on his own, doesn’t like to be left alone for more than a few minutes or he cries and passes out, cannot tolerate sitting in a stroller without having it pushed or aggressively jostled, and is basically held/touched/jostled by somebody most of the day even though he is heavy and only getting heavier. Once all these details have been accounted for, Andrew is a happy guy.

And you know what? He’s a happy guy most of the time, thankfully! But it takes an extraordinary amount of work and patience to keep him that way because his baseline state is typically one of physical discomfort.

Going at it alone, with no end in sight, most of us would start to lose it.

I am doing much better because I am not going at it alone. I am fortunate to have–and often, buy–the support system and village to make that possible. This is why I appear reasonably sane and cheerful most days. I get a break from the day-to-day physical grind of constant care, which alleviates some of the emotional baggage accompanying it, which in turn, allows me to focus on the incredible sweetness and gifts of Andrew. I can continue to work but at a part-time capacity. I am also able to give my other two children plentiful one-on-one attention and they get to do the things that other kids get to do. And, equally important, the village allows me to have quality time with my husband.

I realize it isn’t considered good form to talk about the struggles. I know talking about the daily challenges and admitting that it can be hard makes people uncomfortable or might make those who pity us pity us even more. I know first-hand that it is preferable to hear about how amazing and life-changing the experience has been, how it’s made us so much stronger, how I wouldn’t change anything about our lives, how this experience has been such a blessing in disguise, and this and that. There is that, too, of course. But glossing over the struggles strikes me as disingenuous.

Caring for a severely disabled child, particularly over the long, long term can bring weariness. I am as optimistic as they come, seriously. But only three years into the journey, I find myself weary even with the help of my quaint little village. Caring for a child with disabilities has a way of challenging one’s marriage, one’s relationship with their other children, one’s faith, one’s sanity, and every original notion of what one once believed to be so essential for a life fulfilled. With all of this challenging going on, the results can be either really great or really terrible.

Looking back at my two harsh takeaways from my college days as a respite worker, I have much more perspective about what the families must have been struggling with for years and years. During a time when society pushed parents to institutionalize and forget about their disabled child, these parents went against the conventional wisdom of doctors and professionals by choosing to keep their child at home. Consequently, they were sent home with no support, no help, no respite. Most of these families did not have the choice nor privilege of having a village help them until, often, decades later of going at it alone. They also did not have the virtual support and amazing community that the Internet today provides. That’s where I came in, years later, to provide long overdue respite for families, only to freak myself out in the process about the pervasive sadness and dysfunction I felt in each home. But I see now in a way I didn’t see as clearly before that the families I worked with were ultimately acting out of unconditional love for their special needs child. Those parents were doing the best they could under near impossible circumstances and I salute them for it.

Despite my initial freak out about having one of my worst fears come true, things have been okay. In fact, they’ve been more than okay. Often, things are quite awesome. However, it is a challenging journey and not meant to be traveled alone. I am glad to have recognized this early on and to have the good fortune of going on this journey with a loving village at my side.

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14 Responses to It takes a village

  1. Maggie says:

    Irony of working with “special needs” and then having own is my story as well-sometimes i feel like it is a dream-only surround myself with people who create a positive life-some professional villagers that help me get through this-son’s physio (most positive angel who has picked me up and guided me along)- ped neurologist who understands what is important in life and gives my child the greatest hugs-conductive educators who are positive, make my son laugh and believe he is designed to move and integrated into this world-and of course my mom who is always the last person standing and providing a stable life for my daughter(son’s twin sister) each time we have to make a mad dash to the ER with another life threatning seizure-our next goal is to experience life as my daughter says as ‘one big happy family’.

    • earlybirdies says:

      Hi, Maggie. Glad to hear you have such a positive village, too. They make life so much better and bring some semblance of normalcy to a rather unique life. So glad your daughter can enjoy the stability too thanks to her “one big happy family”! Thanks for leaving a message!

      • KP says:

        Hello Andrew’s Mama,
        I have some information I wanted to share with you that I hope you find helpful. Please, please, please, do not consider ANY of this criticism or judgment. It is not. I know you love your son, Andrew, and want the best for him – no question there. I simply want to bring a story and a therapy to your attention. You and I share many similarities in our personal stories from twins to our current day therapy schedules. In the little I have read about your family, I understand that Andrew has challenges with vision and hearing on top of other muscle control issues. However, I have not read anything that references Andrew’s cognitive state. I would imagine at his age and with his challenges, it is difficult to even measure this right now. Perhaps now, is not the right time for Andrew to go to school but please, consider it again for later. Please, research information on Helen Keller – she was a blind/deaf woman who went on to obtain an education and be entered into the Hall of Fame in her state. She did not have cp, but she also did not have advanced technology available to her (eg. ipad) as a communication tool. In addition to the social aspect of education at any age or cognitive level, Andrew may have the potential to be a ‘Helen Keller’. Also, please, check out intensive therapy (IMOT) for Andrew. Our therapy schedule looks much like yours – 10 hours therapy per week. We have seen little results. However, in September, our son received intensive therapy (IMOT) at NAPA Center in Los Angeles and the results have been amazing. Our son is 2.5 years old and we have finally seen results from a therapy! FINALLY!!!! I wish I could share about IMOT with every parent. I feel like so much therapy in the past was a waste of time. Finally, we have found some place and a therapy that is helping our son. I saw Andrew move on a video, so he has some muscle control – he can move. There are other places that offer this same type of intensive therapy as specialists are seeing the results so these places are beginning to pop up. I’m not going to lie – intensive therapy was tough on our entire family and like any specialized therapy its costly (insurance does help). It is 3 weeks for 3 hours/day. For Andrew, at 3 years his would be 4 hours/day. Despite the exhaustion, it has been the absolute greatest blessing for our son. We signed up for a second session in December. I told my husband we will go every 3 months until our son walks then we will widen the gap in visits.
        Keep/get Andrew in the pool too – our son is so happy in the pool. He is becoming quite the swimmer. For a cp child, water = freedom!
        Wishing you and your family all of the best. Andrew is so blessed to have a Mama and family that loves him so much!

  2. Kim Manning says:

    I’m still convinced you are super mom! This posting was incredibly inspirational, and I really am in awe of you. xo

  3. Matt says:

    We are always there for you and your family.

  4. erin k says:

    i LOVE this family!!!! ❤ xoxoxoxo

  5. Joanna says:

    I found your blog a little over a year ago when my son was diagnosed with severe CP at 9 months of age. I was desperate to find some sort of special needs community and mentally and emotionally prepare myself for what lay ahead. I remember being overwhelmed and terrified by your posts. I kept thinking, Dear God, Please don’t make us go through this. But here we are and we’re getting though day by day.

    “It Takes A Village” resonated deeply with me. I have great respect for how honest and upfront you are about your life. I found myself nodding in agreement as I was reading. Your decision to hire outside help also struck a cord. I’ve begun to realize that for my sanity, marriage and relationship with my other child, I need professional help. I’m just beginning to look into it and now I don’t feel as guilty as I did before.

    Thank you for your blog I feel less isolated and unbeknownst to you, you’re leaving me a great trail of breadcrumbs to follow (our boy’s have a lot of the same issues). If you’re ever passing through New Canaan, CT, please let me buy you a cup of coffee.

    • earlybirdies says:

      Joanne, your message made me tear up a little. Desperate for a glimpse of what lay ahead, I too, turned to the Internet, and learned so much from those a bit and much further ahead in the journey. I’m so happy to know that I’ve passed it forward to somebody else. Yes, don’t feel guilty about seeking help! We all need help but special needs parents often need A LOT more! I did not feel guilt about it from day one because I had observed as a respite worker what *could* happen if a family traveled solo for too long. May your family be in a much better place in the very near future. Thanks so much for the message. Made my day :).

  6. What a treat it was to find this update! I can’t BELIEVE Andrew and Eleanor are 3. Wow. Happy Birthday. They are both so big now!

    I always love reading your pieces because they are real and honest.

    I didn’t know you’d worked with people with disabilities before Andrew was born.

    I know how important a support network is, but I sometimes find it hard to find. I almost feel like I have to go on a friend-seeking search so I have more people in my life I can call on a regular basis (just for a chat). As my son is 19, I have realized how costly it is going to be to provide him with meaningful care when he is no longer at high school — it is much more expensive than preschool childcare and there will be no endpoint in our lives. I’m kind of amazed at how little public recognition there is of families like ours, and our extraordinary costs.

    I would love for you to write another piece for BLOOM. Do you have ideas? Please let me know. Did you get our last issue in July? I’m so glad to see the pic of your beautiful family. Louise

  7. Emily says:

    Such a moving post. Your optimism and your daily struggles both come through. I’ve been missing you and thinking warmly of your whole family. Sending love…

  8. Ray says:

    ❤ you are so strong. I will always admire that.

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