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

by | Reflect & Connect

Making Unpopular Choices as Parents of a Child with Special NeedsDear 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. We know that it must be equally as difficult for you to be on the outside watching us struggle as it is for us to be living this reality.

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 may have you scratching your head.

We simply ask for your support in accepting our decisions.

7 Unpopular Choices Parents of a Child with Special Needs Make (and why):

1- Not to label. Sometimes, we decide not to get the official diagnosis for a condition we know our child has. We have weighed the pros and cons, and despite what it might seem like to you, it doesn’t really matter to us to have the label stuck on our child. Where it is convenient, we do it, where it is not, we avoid it. Thanks for respecting that.

2– To homeschool. Strict starting and ending 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 struggling to get ourselves out the door at the same time is just not feasible when our child has been up since 2 a.m. (and falls back asleep minutes before the alarm). 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).

3- To leave a full-time employment (with plenty of seniority, security and benefits). We are not rich. We aren’t even close. We are struggling daily to make ends meet. 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 full-time attention more than we need things. Plus, we need to protect our health, too.

4- Minimal to no extra therapy at all. We are grateful for your connections to private therapists and other medical professionals. But, 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 are tired. We struggle to find a place of normalcy each and every day. We cannot have “normal” 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.

5- Alternative remedies. We are not negligent. We love our child beyond words. If we choose to try alternative/ natural remedies, we do it because our child is already so inundated with chemicals (that may or may not further affect him neurologically). Please know that we have done our research and that we would not jump into something without adequate knowledge. Alternative remedies provide natural, non-invasive solutions to medical issues. Our child has been poked and prodded enough in his lifetime. We want to minimize that as much as possible.

6- To boycott over-stimulating events. If we aren’t showing up to family/ friend 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. We have a heavy load as it is. Adding illnesses or meltdowns to the mix does not a healthy-life make.

7- To keep our child close. We are not smothering our child. We are keeping our child close because he cannot speak. He also has daily needs and medical issues that only we fully understand. Unless you’d like to accompany us to each of his therapeutic and medical appointments for a year, please don’t insist that we are overbearing.

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 also don’t think we are better than you.

Understand that the choices we make are out of utter desperation for a calmer, more harmonious and more meaningful family life. We have already tried mainstream options, but they just didn’t work for us. In fact, they made our lives more difficult.

Longevity is important for us. We need to catch a break so that we can keep going as a family as we are in this 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 doing the best we can after having expired all other options (and believe that we have tried/ considered them all by now).

We could not make all of this work without your love. You are the pillars that hold us up in this blueprint. You are a huge part of why we can keep going each day.

We need you.

We thank you.

Love,
Parents of a Child with Special Needs

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.

    Reply
    • 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.

      Reply

Submit a Comment

Your email address will not be published. Required fields are marked *

More Resources

Continue reading my essays, activities, and case studies for supporting the education of disabled/chronically ill and neurodivergent children.