Making Plans and Breaking Plans: Special Needs Parenting in a Nutshell

Before I became a mom, I envisioned having lots of play dates, large birthday parties, trips with other friends and their kids, cousins, kids being kids, and having a great circle of support. I never imagined losing friends or even some family until having a child with special needs. I also never imagined losing support. But we have.

I often feel like a bad friend because I am constantly cancelling plans. When you have a child with special needs, your entire world flips upside down, and you aren’t the person you once were.

Today my life IS last minute. There are plans made, and then those plans are cancelled. Not because I want to, believe me, I WANT to get out and be with friends. So much. But the day to day shuffle of speech therapy, occupational therapy, ABA therapy, physical therapy, and trips to the Doctor can make for a very long day. Add to it that my son who has Autism Spectrum Disorder among other things, is constantly being pushed to do things that his brain/body simply cannot do. The days are long and I am often left feeling emotionally drained.

There are days that run smoothly, and many other days that do not. There are things that overstimulate my son, which causes extreme meltdowns and snowballs into a storm of HUGE emotions that break down. It’s like walking a fine line each day, trying not to cross over to one side too much. Everything needs to be balanced. Play dates, outings, special events (especially large crowds) have entered a holding phase where we say yes to these things, and then wait to see how the day goes before deciding to go or skip it. If you’re a parent of a child with special needs, you know what the outcome typically is.

Most of the time if you do attend any of these events, you spend the entire time running, chasing, entertaining, and playing with your child because there are social, emotional, and physical limitations. There is no time to relax and enjoy your friends or family, and by the end of the time you spend there, you’re exhausted.  Sure there are many other kids who go through all sorts of difficult stages and can make any outing exhausting. For most though, these stages are temporary and their child outgrows it. For our son, this not a “stage”. This is not something he will outgrow.

Having a child with special needs can make you feel like you forgot what the outside world looks like. There are many days you don’t even leave the house.

To the parents with a child who has special needs, don’t feel like a bad friend for cancelling more times than you would like. It is our job to keep our kids safe and in an environment that is best for them. Try to explain to your friends and family why you might be late or have to cancel. Help them understand as much as possible, and surround yourself with people who love and support you. Sometimes leaving the house is not an option. Sometimes you have to cancel for the 10th time, and that’s OK.

 

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