The day after we received my son’s diagnosis, I didn’t blow dry my hair. I just put it back in a bun and thought, “Well,I’d better get used to this. The sound of the dryer is always going to bother him, so I might as well give up on looking presentable.” (Clearly I am not dramatic at all..she says with a dramatic flair.)
At the time, it seemed reasonable. It seemed entirely possible that my whole life as I knew it was over.
I was speaking with a mom of a newly diagnosed little boy recently. She was overwhelmed (as we all were/are) and a little panicky (as we all were/are) and felt like all the things were taking over all her days.
“It’s not his diagnosis. It’s everything else. I feel like there is no room for all the normal things like cooking dinner and laundry and getting ready in the morning and date night and…and…and…” she said tearfully.
I nodded and tried so hard to assure her that it will get better. That she will figure it out. That it might not be the same, but different doesn’t mean less than or that you are somehow doing it wrong.
I am not sure I helped. In my desire to encourage and comfort her, I forgot to tell her that there are some dirty little secrets that get me through my days.
I forgot that sometimes, especially in the beginning, the practical almost always matters more than the spiritual.
That sometimes, you just need to hear another momma say it is OK to let your child eat ice cream if that is all they seem to want and can tolerate. Or that you can let your son play video games at four in the morning because you need to sleep and you can’t function for one more minute.
Sometimes the practical, daily life tips and tricks make the most impact.
So, with that in mind,I thought I would share my best tips for living life, day in and day out, as a proud mom of two boys, both with varying special needs.
5 Practical Lifesavers For The Special Needs Mom
1. The right headphones for your child can literally change your world.
Find the ones that work (and if your child is anything like my son, there will probably only be one set on the planet that will work just right with your child’s ear sensitivity – but trust me, it’s worth it to scour the land and find them) and stock up. Have a pair for the bedroom and another in the car, at all times. Your child can pop them anytime there is too much noise, or just needs to check out. It’s amazing what a good pair of noise cancelling head phones can do.
Also, I have found that turning up an audio book really, really loud in the car helps to tune out all the other noises (and distract him with a story) if he is not able to tolerate the headphones for a time.
Plus it means, if you have the energy, you can blow dry your hair!
2. It’s OK to hide in the bathroom for as long as necessary.
I actually sent a text just last week to my friends that said, “I have reached a new low. I just lied to my son and told him I have diarrhea in order to get more time alone in the bathroom this afternoon.”
I am not proud of it.
But you know what? I needed it. My friends texted back and confirmed, without laughing at me, that hiding in the bathroom, and even lying about bodily functions, is just something we sometimes have to do.
Taking a moment to yourself is always better than trying to push through when you feel like you are crumbling. Even if you have to fake stomach problems to do it.
3. Screen time is not always the demon we make it out to be.
My son connects with others through his fixations. As such, he spends way more time than I ever thought I would allow on his screens. He researches, he reads Kindle book after book, and watches You Tube videos – all about building computers, or aquariums, or dart frogs, or whatever the interest of the moment is – on his device. He then uses that information to connect with me, his family, his friends, the people at the pet store, and anyone else who will listen.
It helps him be a part of the world – not escape it.
So, if it means he is on the screen for an hour and I get the dishes done, I’m good.
4. Use Your Phone’s Hot Spot
Riding in the car, waiting in the doctor’s super loud waiting room, or being in an airport is a painful experience for my child. These have always been meltdown prone places for us.
This hack, more than any other, has decreased my son’s anxiety when we are out and about. By connecting to the hot spot on my phone, my son can put his headphones in (see #1) and then research, watch videos on YouTube or down load another Kindle book on his device (see #3). It combines the best of my life hacks into one super hack.
The even better news? He is more willing to set aside the media and engage with me, his family, his friends – with the world – when we leave the stressful environment.
5. Good Enough Really is Good Enough.
When my son doesn’t sleep well (and I therefore do not sleep well) for several nights in a row, the laundry piles up, and my husband can count on ordering pizza for dinner.
When we have therapies and doctors appointments that back up the calendar, my kitchen floor is sticky.
When I have spent the day wandering around the pet store with my son talking incessantly about all his favorite things, and really trying to focus on him, his sweet face, his bright eyes, his intellect – really, really taking in the moments – the bathroom might look a bit like a crime scene.
I am learning to say, “So what.”
I am learning that good enough, really is just that.
Sometimes, good enough is even the best.