Moving through the phases of care for loved ones with ASD. My story.

I can personally attest that caring for a loved one with autism and special needs is a 24/7 job. And, whether you are providing most of the care yourself, looking for a caregiver for a loved one or just searching for more information, the process can be overwhelming. Since February includes National Caregiving Day, I felt sharing my experience in this realm would be the ideal topic for my blog.

When Maci was a baby, through sleep deprivation and the worries of being a new mom, I didn’t realize I actually had it easier then, at least when it came to her care. Her autism hadn’t yet presented itself and she was doing what most typical developing babies were doing: eating, playing and sleeping. Finding a babysitter or having a family member to give me a break or let my husband and me have a date night was pretty easy.

As a toddler, once we knew about the autism diagnosis, her care wasn’t necessarily challenging but I was doing more for her. She was on medication and we had begun therapy work. While, I didn’t want a nanny or any type of full-time care, I did want to find someone I could rely on. I didn’t want to have to explain Maci’s needs each time a caregiver arrived. I needed someone I could trust to give her medications/supplements and help her with exercises. Friends and other moms came to my rescue (such a blessing!) They pointed me to a website to find local sitters. Through this site, I found a couple of wonderful women I called on a regular basis. It was super helpful! This was a great resource for several years until we moved to California.

At the time of the move, Maci was 5 and I realized we were going through another phase in our caregiving journey. It was then I began to think about caregiving in terms of phases. If you think about it, all parents are parent through the various stages of our kids’ lives – parents with kids on the autism spectrum are no different. The difference, I believe, is that we experience an increasingly additional amount of work and support to help our kids navigate their world, especially as they get older.

In California, I began looking for another caregiver to help me with Maci. Friends weren’t going to save me this time as we didn’t know anyone when we moved. I had to rely on my own detective skills and the internet. One nanny service stood out to me, so I started there. In this phase, I still didn’t need a nanny but I needed some reliable backup. I remember telling my story to the woman who owned the nanny service. I explained our situation with Maci and the sitter service we had used and loved in Seattle. While hers wasn’t like the tried-and-true one we loved from back home, she graciously agreed to work with me and help me find suitable candidates. Together, we created a customized sitter program. She found and screened the candidates. I met with each person to determine who was the best fit for us. It worked out very well.

We continued using this service for about a year. Gradually I began realizing our needs for Maci were once again changing and we were going into another phase as a family. Not only was Maci getting older (now 7), my husband was traveling much more. It was clearly getting harder for me to manage our situation alone. Sometimes I just needed another set of hands. Luckily, one of the caregivers we had been using regularly agreed to become Maci’s nanny. So, while I had never even considered that I would want or need a full-time nanny, all of the sudden our circumstances changed and it happened. We stayed with our nanny for 5 years until we moved back to Seattle.

Maci was now 12 and we found ourselves in yet another phase. She was more independent and did not need the additional support that a nanny provided. I also felt it was important for her to take on more responsibility for herself even though we were still a long way from her being able to do things kids her own age were doing. I still needed help and, gosh darn it, my husband and I wanted some alone time together. I hoped I could go back to the same sitter service I had used back when Maci was little, but sadly it was no longer available. I remembered a friend in California used care.com and really liked it. I wasn’t very familiar with the site but thought I would give it a try. And I’m happy I did.

From the start, I found a woman we absolutely adored. She bonded with Maci instantly. A perfect match! We called on her for about a year until she went back to work for her previous full-time job. I went online to care.com again and found a couple more people that worked for us just fine.

Recently, I thought of a different idea of asking our school. As we are in a private school, I’m not sure if this is a viable option for all, but I reached out to Maci’s teacher to ask if she and/or another staff member would be interested to make some extra money by helping us with Maci at home? A win-win for all – they make extra money and we get the benefit of a caregiver who knows Maci super well and has special needs training. It has been wonderful!

It’s hard to know how long this phase will last. And, what options for care we’ll need to discover in the future. Here’s what I have learned over the course of this caregiving journey:

  1. Tap into the resources you have at your disposal. Be it friends, other parents or school staff, chances are someone has some ideas for you to try.
  2. Identify your needs before you search. What type of care are you looking for? What qualifications are you looking for in a caregiver? How frequently will you need support?
  3. Understand the financial implications. Know what the “going rate” is for various types care to help determine how much the care will cost. Explore any state or local avenues for financial assistance.
  4. Realize your needs will change over time. What works for you today may not be the care you need a year, or even 3 months from now.
  5. Get creative. Just because a resource doesn’t seem like a perfect fit on the surface, dig deeper and see if there are some hidden gems waiting to be found.

As I was thinking and preparing for this blog, I did some additional research on other ideas, resources and information I felt would be helpful to share with you. Here are some additional sites and articles. I liked them for guidance on how to find a qualified caregiver and ideas on where to find a caregiver.

Please find these on my website! #MAPit


Marikay Cuthill is mother of Maci, a vibrant, curious 13-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com


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