The other night I was reading an online article that talked about “Regular Moms versus Special Needs Moms”. One of the differences listed was: “Regular moms enjoy reading the latest best selling book. Special needs moms should receive an honorary degree for all the disability books they’ve read.” I had to laugh at the truth of that statement. If you were to look at my bookshelf, you would see several titles confirming this. Though, I confess, I read more than my fair share of best sellers, too!
As I was reading the article, I thought about my own reflections on the oft-asked question, “What is it like being a mother to children with special needs?” Honestly? Sometimes I don’t feel like one. After all, there are so many children out there with issues far more severe than my own children have. And, I can say with more appreciation than many, that thankfully, blessedly – our children are healthy. Our children look and typically act normal, too – if you ever meet us in public, you will likely never pick up that there is anything “wrong”. And so, sometimes, I don’t feel as though I deserve the label. And yet, I admit, that at other times, I feel the weight of those three words: special needs mom, to be overwhelmingly evident in my life.
Despite the outward appearances of normalcy, if you could see inside our house for a day, or days, you would see some of the ways that being a special needs parent can manifest itself. For starters, if you looked at my day planner for September and October, you would notice that it had far more appointments for doctors and other medical appointments listed on it, than anything else. In the last four and a half weeks, there have been six appointments between the two children, with three more coming up in the next few weeks.
Our son was diagnosed with Sensory Processing Disorder (SPD) at the age of 5. Our daughter was diagnosed with Autism Spectrum Disorder (ASD) at just over two and a half. Our son was placed under the care of an occupational therapist (OT), and has also been followed by a physical therapist (PT). Our daughter receives twenty hours of Applied Behavioral Analysis (ABA) therapy in our home every week. She also has yearly speech therapy (ST) assessments. Abbreviations are a part of a special needs parent’s life, and you will drop them commonly in conversation, forgetting that most people have no idea what they mean.
While our son is followed by an OT, it is up to my husband and I to implement his therapy at home. That is another reality of special needs life – you are no longer “just” a mother. You become a therapist – an OT, ST and PT rolled into one (see above for the meanings of those abbreviations!). You become fluent in a medical jargon language that includes words like proprioceptive and vestibular input. You become an expert on navigating the health care system, learning how to be an advocate for your child, seeking out available help and supports. You make a lot of phone calls. You have to learn to stop worrying about bothering these people.
In fact, you are constantly learning. You have to learn the intricate ins and outs of the sensory input your child can tolerate, so as to avoid a meltdown. You have to learn what your child who sometimes has difficulty with expressive communication is trying to say to you, so that you can avoid frustrating her to the point of a tantrum. You have to learn the difference between a sensory meltdown and a behavioral tantrum. You will feel guilt when you realize that you’ve disciplined them for what was beyond their control, when you missed the cues again. The cues and the triggers can change – a lot.
You become a teacher. Perhaps not quite as literally as I have done by taking on the task of homeschooling, but you will teach coping mechanisms and ways of dealing with overwhelming sensory input. You will teach your child all the things that don’t come naturally to them; the simple things that so many take for granted like playing with toys, using their imagination, saying hi to their peers, looking at people in the eye, how to stop the vocal stim that may drive people up the wall.
You will more than likely be sleep deprived. The majority of children on the spectrum suffer from sleep dysfunction, as do many others with special needs. When your child suffers from sleep dysfunction – so do you! You will worry if you’re doing enough, you’ll doubt your decisions. You’ll wish people could see the screaming meltdowns, so they’d understand. You’ll wish they wouldn’t see them and judge you. You will deal with public misconceptions and misunderstandings about your child’s diagnosis. You’ll struggle with knowing when to bite your tongue and when to speak up. You’ll mess up on both of those. You’ll have moments of heart ache when you watch your child struggle with something that comes so easily for so many other children.
You will gain an appreciation for the simple things that few are able to fully understand. Milestones that most brush off or don’t even notice, will become treasured memories. While it’s true at times you may feel more worry and sorrow, you will also feel more joy and pride. You will learn to cherish the small moments, such as a small voice asking you to cuddle for the first time. In many ways, you’ll become a more relaxed parent, as you realize that the tiny things so many get uptight about, really don’t matter. You’ll become more sympathetic towards others, and less judgemental of that mom with the screaming child in the store. You’ve been there.
Most of all, you’ll realize that with or without a label, we all have our own quirks and limitations, and that in the words of Whoopi Golburg, normal is just a setting on your washing machine.