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Moms Of Medically Complex Kids Have Greater Health Risks

Recently, I shared a few tips from moms of medically complex kiddos. While many of them were practical - how to navigate insurance, how to make sure your kid won't have any prescription interactions, and more. The last - and one of the most critical pieces of advice - was to prioritize self-care. While many doctors will tell you that stress wears down the body and to avoid it as much as possible, some moms don't have that luxury. The parents of kids who have medical issues - be they chronic or acute - are often shouldering the hard work of caring for that child with little support.

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Yes, these parents know there are support groups. They're probably part of some of them! Consider their plight - the other parents they meet in these support groups can commiserate in feelings but can't offer tangible physical support. If they did, it would be detrimental to the care of their own children. When I say tangible support, I mean: cleaning the house, cooking meals, running errands, helping with finances, and more. Those are the kinds of tasks that fall on these parents, adding to an already stressful situation. This daily wear and tear often seems overwhelming to me, and both of my kids are healthy. I can only imagine what it would be like to walk this path with a child who has very specific needs.

All that stress, the juggling of basic life components - it adds up. One brave woman, Sandy Golder, shared the statistics she found regarding parents of kids with special needs. The study she cited defined special needs kids as those with "intellectual disabilities or Autism Spectrum Disorder". According to that research, special needs moms are 40% more likely to die of cancer. Within moms of children with ASD, that cancer risk went up by 50%. Now, that isn't saying that these moms are more likely to develop cancer (though that may be true). What it's saying, instead, is that the cancers they have are either more deadly or they do not receive adequate treatment. Something in my gut tells me that much of the time, these cancers go undetected or ignored for longer than the average person. Why? Because moms of kids with special needs pour so much of their energy into the care of their child. This vigilance, while in some ways admirable, can be deeply harmful to special needs parents when it comes at the cost of their own health.

No mom is an island. Ask how you can help them remember self-care.

It gets worse. Moms of children with special needs are 150% more likely to die of cardiovascular disease. In fact, the overall risk of death - by any cause - is twice as high for moms of children with special needs. What's even more concerning is the rate of death by "misadventure" - defined as homicide, suicide, or accidental death. These mothers are over twice as likely to die from these tragic causes. This is alarming and deeply troubling.

If you have a friend who is parenting a child with any condition - ASD, intellectual disability, physical limitations, ANYTHING - offer to take some of that load off their shoulders. Don't just encourage them to practice self-care. Walk into their life, help them find childcare. Make the phone calls. Do the research. Figure out how they can get funding to afford said care. Then buy them a gift card for a pedicure and tell them to get out of the house. Take them with you when you go shopping, or on vacation. Make space for them in your home and your heart.

Take them with you. Self-care isn't always easy.

As Sandy explains, the desire to socialize is a core human need. Living a lifestyle where it's hard to afford nutritious food, it's hard to find time to exercise - these are risk enough in and of themselves. Divorce rates for parents of kids with ASD are over 80% - which means many of these moms are parenting solo. The social isolation - the loneliness - can be the literal nail in the coffin. You may not be able to change the reality of a difficult diagnosis, but you can help lighten the load in tangible ways.

 

Do you have a child with a special needs diagnosis? Have you forgone care for yourself at times? How can your community help support you so you can lessen these risks for yourself? Share with me on Twitter @pi3sugarpi3 - so I can share with our readers. 

 

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