When You are Parenting A Little one With Particular Wants, You Are At all times ‘On’
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I am a mother of a special needs child and I am exhausted. This isn’t the kind of exhaustion that takes a nap. The exhaustion is relentless and it comes from not only standing up for and taking care of my child, but engaging with anyone who can give me judgment and advice on how best to help my child. This is on top of the work, raising other children, and the other responsibilities that come with real life.
When raising a child with special needs, there are no vacation days with off switches. Raising my child, who has half a dozen diagnoses, requires constant attention, attention, energy, flexibility, dedication, and patience. As my child gets older and their needs develop, I need to develop too. When I get to bed at night, I thank both of God that I am allowed to be the mother of my child, but I also recognize the epic exhaustion.
I speak openly about my exhaustion, not because I want someone to feel sorry for me, but because it takes so much work to hide it. There is freedom to speak one’s parental truth. The problem is that there is a cost to this. Although I consider my inner circle to be my safety net, there are those who choose to respond inappropriately. It’s daunting and leads to further frustration.
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I can’t tell you how many times someone has responded to my exhaustion with a casual comment that I need to be more self-sufficient. As if nailing, a hot bath, a facial or a massage, or a shopping spree magically eradicated the demands of being a parent of a child with special needs.
I am also met with a comment “just take a vacation”. You know that vacation costs a lot of money and that it takes time to save, right? If I don’t take care of my child, who will? I’m pretty sure it won’t be the person who lightly tells me to just relax with a fruity drink by the pool in a tropical spot a few thousand miles from home.
Which leads me to the fact that finding care for a child with special needs is extremely difficult. We need to find someone we can trust, who follows our carefully set rules and expectations, and who also has the creativity and knowledge to adapt appropriately to our child when necessary. In all fairness, most of the time we barely know what to do, so it’s almost impossible to find someone to do the same. This person must also be able to look after several children at the same time.
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My child needs a lot more supervision than another child of the same age. This is not only to ensure that interactions go well, but also to keep my child safe. If a child lacks impulse control and executive skills, and is also hyperactive, the combination can be dangerous. I need someone who can predict what my child will do – before my child does. Do you understand what I mean? It’s a big job.
Parents of children with special needs not only work for our children every single moment of every single day, but we also fight against stereotypes and against judgments. We have been asked so many questions along these lines. Why don’t we just discipline our children more or better? Have we tried essential oils, dietary supplements, chiropractic care, prescription drugs, therapy, a special diet? Maybe we just need to radiate more positive vibes into the universe or pray harder and ask God to heal our children?
Trust me, if we could just whisper a prayer, rub our child’s wrist with some oil, or avoid sugary foods forever, resulting in our child being cured, we would do it in no time. But that’s not how special needs work. And to be honest, defending our parenthood from all know-it-alls only tires us more. We don’t need advice, pity or criticism. We just need support. If you can’t offer that, please step aside.
I absolutely do not respond to any unsolicited advice or ignorant (and unwanted) feedback. However, I would be lying if I didn’t tell you that these little excesses on my ability to raise my child pile up until they topple over. I have bad days when I wonder if the critics are right. Maybe I’m not doing a good job. Maybe I am not good enough. My child deserves the best, not a burned-out parent crying in the shower and wondering if they’re doing the right thing.
I spend a lot of time advocating for my child, be it simply through my presence (don’t mess with my child), in school meetings, or in social situations. While other moms can band together and chat about baseball practice and summer camp, I keep an eye on my child while I try not to choke them. There is always a balance. Letting my child make mistakes, but also having successes while standing around.
The reality is, I’m always there. Even after my child is put to bed and (finally) soundly asleep, I read books and articles about how best to meet their needs. I research our latest challenge, special education laws, and new insights into new therapies.
Like all mothers, I want the very best for my child. I am blessed with the gift of being their mother and I will never, ever go down without a fight. But if I’m being honest, the constant fights are exhausting. I need a lot more “go, mom” cheers and a lot less outside criticism from those who will never understand the beauty and pain that comes with being always ready.