Making Unpopular Choices as Parents of a Disabled Child: An Open Letter to Family & Friends

by | Reflect & Connect

Dear Family and Friends,

We want to thank you for all of your support for the journey our little family is on. We recognize that ever since the diagnosis of our child, our relationship with you has changed. You often ask how you can help.

Being parents of a disabled child means we sometimes have to make choices we never thought we’d find ourselves making. This letter lists some of the unpopular choices we have made over the years that you may not agree with.

We simply ask for your support in accepting our decisions.

6 Unpopular Choices Parents of a Neurodivergent or Chronically Ill/Disabled Child Make (and Why):

1. To homeschool. Strict starting and end times don’t work for our child who has irregular sleep patterns. Getting our child ready for school at a certain time each day and managing to get ourselves out the door at the same time is just not feasible when our child has been most of the night. If we’ve decided to homeschool, we have daily logistics to back us up–not just the educational part (although, if you hang out on this blog long enough, you’ll learn how homeschooling also benefits a disabled child academically).

2. To leave full-time employment (with seniority, security and benefits). We are not wealthy. We aren’t even close. Even though one of us has decided to leave a full-time so-called secure career, you can bet that we mulled over the decision for a long time. We have decided that our child needs us more than we need things. This lifestyle change benefits us as we work around flexible schedules.

3. Minimal to no extra therapy at all. We are grateful for your connections to private therapists and other medical professionals. We kindly decline the offer for many reasons. We receive public services, and we stick with them because they are free–even if they are infrequent. We aren’t terrible parents because we choose not to provide our child with intensive physical or speech therapy. We cannot find rest with the exorbitant amount of appointments we already have. Adding more intensive therapies does not only cost us more in dollars, it costs us more in time. We would much rather reclaim the time and spend it as a quiet little family doing quiet little family things. Also, we are not trying to fix our child.

4. Alternative remedies. We are not negligent. We love our child beyond words. We sometimes choose to try alternative/natural remedies in addition to conventional medicine. Please know that we have done our research and that we would not jump into something without adequate knowledge.

5. To boycott over-stimulating events. If we aren’t showing up to events, please don’t take it the wrong way. It hurts us to not be able to be part of the festivities (especially during the holidays). Our child has many sensitivities. Sometimes, one event can take us out for an entire week.

6. To keep our child close. We are not smothering our child. We are keeping our child close because he has daily needs and medical matters that only we fully understand.

Contrary to how it may appear to others, making unconventional choices does not make us wimps. It does not make us lazy. It does not make us intentional rebels, either. We don’t think we are better than you.

Understand that the choices we make are out of the desire for a calmer, more harmonious and more meaningful family life. We have already tried mainstream options that didn’t work for us.

Longevity is important for us. We aim to keep going as a family for the long haul. We need to be able to sustain the same energy, enthusiasm, and direction for our child 50 years+ from now (a long time after most parents are left empty-nesters).

What can you do to help?

Hold us.

Support us.

Don’t murmur behind our backs.

Spread the message that families like ours are constantly battling systems. We don’t want to fight with our loved ones, too.

We need you.

We thank you.

Love,
Parent of a Disabled Child

 

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2 Comments

  1. Chantal

    Thank you for writing this open letter.
    I understand what you mean.
    I have an autistic child. I have many reasons to believe he is dyspraxic and dysphasic, but what benefit will I get from an “official” diagnosis since we already have the handicapped child supplement?
    To maintain my sanity, I have decided a few years ago to decline any therapy offered during weekends and evenings, so I can enjoy some family time. I also have a so-called “normal” child and a husband, in addition to a child with special needs.
    I also give some natural remedies to my child. I believe they help. I am sure they can’t hurt him.
    Thank you again for expressing in an open letter how so many of us feel.

    • Gabriella Volpe

      Oh, Chantal! Thank you for sharing your story here as well. As parents, we are the best judge of what we should and should not do. We do ask for help, we do consult with experts, but ultimately, the choices we make are ours – for the overall sanity of our family. I appreciate you being here and for continuously supporting our journey.

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