First off I want to say that I acknowledge the lovely articles written which one has the title of Special Needs Parents, You Are Not Invisible. That is lovely an all and it sure will help make a special needs parent feel good. And it is apparent that the author did what they could to acknowledge that parents of children with disabilities have feelings, limited strength, and the same rights as anyone else (and really bravo for that, it means so much to see these articles written), but sadly, it is not the reality. Not based on my experience anyway, and I know others who are currently in the shoes that I was in will concur.
I was sleep-deprived, feeling chilled, and running on empty calories that don’t get you far but the fact that my son may have been too cold or too warm was the worst thing for him to experience. The therapist at the school that he attended was concerned that the clothing he had was not meant for the right type of weather and the ‘poor thing’ was suffering as a result. And one even asked me in an accusatory way How would you like it if the only clothing you had accessible to you was too heavy for a hot day or too light for a cold day? Well, I feel either one all of the time because I am on my way to the land of Burn Out.
Additionally, if I ever expressed how tired I was and unwell I felt, no one cared. All that mattered was that my son was comfortable and happy. But don’t they also know that he would be a lot more comfortable and happy if the mother was comfortable and happy? That was never going to happen until I had even a fraction of my needs met which rarely happened. It would have helped as well if anyone showed concerned for the struggling mother.
How about when I have not been able to sleep because my son took my secured bottle of sleep medication (and gee why did I need it at a young age?) and placed it somewhere unknown? I did not even have any bit of sleep that night, literally none at all. But I still had to deal with his meltdowns, run errands while he was in therapy, and keep the house clean. And my poor daughter was not getting the best of me putting it lightly. But I had to put my big girl panties and deal with it because that is what a mother is expected to do, even more so a special needs mother.
And you want to know what was also infuriating? My husband who was working 8 hours a day received a lot more sympathy because he worked all day and was tired so he deserved to rest. Therefore, I had no business expecting him to take on the load since all I did during the day was nothing especially since my son was in therapy for many hours a day at school.
I was told to clean up my act often, and to take better care of my appearance, to lose weight, and to stop being so whiny and do the job I was expected to do. Because special needs parents are expected to be warriors and to put their needs last. This is the harsh reality. Special needs moms (and single dads) are invisible. Until one day, someone did something incredible. Something that was a miracle. It was like pigs flying. I was asked how I was. Not the small talk type of ‘how are you’, but it was a sincere how are you I was asked.
That was music to my ears. That was foreign to me. You mean my well-being actually mattered to someone? They didn’t ask about my son and did not ask how he was. They didn’t ask about anyone else. They asked how I was doing. I told them the truth. I did not sugar coat. I said I was terrible and stressed. She cared. This woman who asked me and who cared was the one who organized respite care and in the end, helped me transition my son to the place where he is today. Even though no one else saw me, she sure did! I will always be grateful.