Expectations for a Mom of a Special Needs child ...
I am writing this post to address a true concern that many parents with a special needs children struggle with. It never ceases to amaze me how people react to this community of people. The comments and behaviors that people make tend to be condescending, offensive, and out of place. Not to offend anyone, however if you make random comments to people, please think twice before stating your opinions to parents of kids with special needs. Also, please quit treating us and our children like we have a contagious disease by staring or even running away when you see us.
As a parent of a child with special needs, I struggle with finding the energy to deal with negativity. My natural reaction is to just stay home with my child. However, that’s not fair! Why should I hide because of nasty people! It amazes me how often people make negative comments this day and age. I thought “acceptance” of differences is the theme of our century, but I guess we have a long way to go!
In my personal experience, I have definitely received many unsolicited comments from people about me and my child. Due to my protective mommy nature, I do confront many of the comments (I know— naughty therapist) but I do so with poise and couth. Many of the questions and comments that I experience link to my appearance and lifestyle... not sure why but what can you say. I’ve decided to dedicate the rest of post answering some of the questions that I receive.
The comments that I listed on this post are ones that I have experienced myself. These Comments came from a variety of people ranging from strangers, doctors, friends, neighbors, you name it!
Common comments are:
“How do you manage to look so good?”
Why don’t you look disheveled and dirty?
It’s amazing how you aren’t super frumpy?
You actually wear make-up?
Why do you seem happy? shouldn’t you be tired and stressed?
How much do you hate your child?
Did your child take all the joy out of your life?
He does act funny, where did the autism come from?
What did you do wrong to cause the autism?
First of all.... What the hell? Why would people say things like this! And why in the world would you say that to someone’s face? Ok... I’m sure some of them are meant to be complements—- but geez. Thankfully, I am a person that has great restraint and do not care very much about people’s opinions. However, when someone comments about my child, it takes me to a different place. I have learned to ignore this junk, but it does leave a lasting effect on my emotional health. During these awkward interactions, I typically respond with a laugh and shrug it off... but c’mon people those statements really hurt!
Due to many requests from other parents, I will give a quick synopsis of ways that I “take partial care” of myself in the midst of my crazy life and mayhem.
Physical appearance-
Why do you expect me roll out of my house looking like hell? Shouldn’t I attempt to look like a normal functioning person! I understand that my kid takes a lot of energy, but that doesn’t mean that I shouldn’t present myself as best as I can (Honestly people, I go to work most of the time so there is a certain dress code I abide by. However, every other day I wear yoga pants and hoodies lol!)? I digress.
Well, I usually take time out to put on my makeup daily, just to be presentable. Plus I have this fear that I resemble a turtle (lol I know I’m insane), so I try to keep up with my skin health by doing clay masks etc every other week etc.
I do dye my hair to cover my premature gray hair (look, life has been a bit stressful, do not judge me). I do not see anything wrong with this. I feel that it is fine for me to have creative expression!
I try to do some form of relaxation practice daily. I do not work out like I should, due to time constraints and exhaustion, so I have gained a little “my kid takes over” weight, but I try to present myself in the same way I always have.
I tend to be in a happier mood naturally. When the sun comes out in the morning, I feel like a whole new human! I smile and laugh quite often. I feel that smiling at people goes a long way. I do at times have to work hard to find positivity, but such is life!
Mental clarity- How do you remember things?
I really enjoy the comments I receive about my mental clarity! I’ve had several of my son’s doctors comment on my ability to understand a lot of the information they discuss especially since I lack sleep. Again— People, this is Rude!!! Just because my son has a special needs and I’m insanely exhausted does not mean I’ve lost everything in my brain! Here are my techniques that I use to keep some clarity:
I am an auditory learner— enough said.
I try to eat healthier and drink my healthy goos so that I can function optimally.
I’ve learned how to function in this sleep deprived world because my son refuses to sleep.
I reward myself weekly. I spend time focused on my mental health at least an hour a week.
Organization- How do you keep track both your son’s and your schedules?
Well, isn’t that a parent’s job to keep track of their children and their schedules? Why am I different? -Just saying.
I really work hard to keep appointments straight in calendar forms— my phone, computer, paper etc.
*Filing cabinets* I know!! Old school, but keeping IEPs, evaluations, treatment plans, etc in special areas of the house. Each person has their own cabinet for each person’s information etc.
Plan ahead—- I preplan constantly! Some people my life think that I am crazy!! However, I’d be such a hot mess if I did not spend time on a Sunday choosing outfits, meal prepping, organizing school gear etc. This way I can just flow through my week smoothly.
Confidence-
To be honest, I do struggle to stay confident in my abilities as a mother at times, however I work hard to erase those negative thoughts and feelings. I do try to spend time focusing on the positives that I do, and just enjoying the happy reactions that I receive from my son. Here are some of the ways I keep my confidence up:
I spend time doing things for myself 4 times a month— manicure, hair appointments etc
I surround myself with positive people, who build me up!
I spend time forming relationships with moms that have special needs kids. (Engage with them monthly)
Keep in touch with other friends that knew me previously so that I can remain an individual— not always in the mom role.
Love-
Really??? Just like other parents, I love my son more than life itself! I cannot imagine caring or loving any one more than I love him (Sorry hubs- I know you understand though). This does not mean life and his diagnosis does not frustrate me from time to time, but “Anything worth having takes work!” I also work hard to have the best relationship I possibly can with my son. That means galloping into target, laying on the concrete outside of the local swim club to look at the clouds, going to the mall covered in stickers because he “said” so and even giving up my beloved sleep. Being a parent is hard, special needs are hard and being a human is hard. I just embrace life.
Hopefully this post will provide some insight on ways that a parent with special needs can remain “sane” in the midst of their chaos. It does take constant work and organization to stay on top of things. If you have a kid with special needs, please know that a community of people who understand the struggle exists! As humans, we are here to support and provide help to each other! Please do not live your life, or accommodate your child’s life, to fit into other people’s expectations!
