The Friendships I Cherish as a Parent of a Child With a Disability and Complex Needs
My 4-year-old son has autism and is developmentally delayed. He also has an extremely rare auto-immune disease. Whilst these things don’t define him, they need to be considered on a daily basis. There are places we can’t go because his sensory system won’t cope. There are things other kids his age can do that he can’t — which can be frustrating for him when around other children his own age. His body is constantly attacking healthy organs, which means he is on immunosuppressants. As a result, he has no immune system, so I constantly have to assess the risks of him being around someone with a common cold or taking him out during winter. He is easily exhausted, which means deciding which invites to accept on a weekend and when we need to stay home so he can rest. One busy day can mean he is bed-ridden the next.
Specialists and therapists are a large part of his life. At the moment, he has five therapists he sees every other week for his autism. He has a team of six specialists at our nearest children’s hospital who schedule his surgeries and procedures and determine his medical action plan. Not to mention his regular visits to the pediatrician. He is constantly asking how many sleeps before this or that will happen. But while most kids usually count down to Christmas or birthdays, he often counts down the sleeps until hospital admissions, surgeries or therapy appointments.
For the past two years, I have been so busy parenting a medically complex child (as well as having an older child with autism), that I have barely had time to think about anything else. I go to work, take my children to medical appointments and try to somehow keep up with the everyday tasks that every household has. I try to fit in fun activities where I can in an attempt to give my children a “normal” childhood. It takes 40 minutes per day just to administer my son’s medications. And during this time, one after the other, friendships faded.
Some friends were quite blunt and told me straight out they couldn’t deal with the complex nature of my life. Others just stopped calling or inviting us out, unable (or unwilling) to try and accommodate for my son’s needs. Some have never walked in our shoes, and don’t understand the challenges having a child with complex needs can create. Whatever the reason, my once large circle of friends is now quite small.
One thing I have learned from this, however, is that the people who have had my back throughout the past few years will be friends for life. These are the people who have only been a phone call away on days when things are tough. They are the people who will always ask what I need when my child is unexpectedly admitted into hospital. They are the ones who are accommodating when planning a day out and who understand if I have to cancel at the last minute. They take meltdowns and medical emergencies in their stride. These are the people who get me through the darkest days. To these people I just want to say a massive thank you!
I wish I could do more to show my appreciation. All I can do is thank you from the bottom of my heart and make sure you know I will always have your back, just as you have had mine. Parenting children with disabilities is isolating, challenging and extremely lonely at times. Good friendships are important, as they empower us and keep us moving forward. Sometimes all that is needed is a text message saying “you’ve got this!” to brighten a difficult day.
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Thinkstock image by EvgeniiAnd