The Truth about being a Mother to a Child with Special Needs

I love you to pieces, and frankly, if you were not a child with special needs I would have been a lesser person than I am. My love for you, and knowing I’m a better person because of you, do not lessen my frustration, and nor do they make me feel better in my day-to-day routine and activities.

To tell you the truth, I’m so tired, that a good night’s sleep won’t even tickle it, and no, a weekend with my husband will not do the trick, because I’ll be exhausted and stressed: who will take care of you, your brother and the dog?

I’m tired from all the things I have to do in order to make this household work. It means that I have to put endless hours and energy in giving you the support you need, and if it happens that I fail to do so, my guilt and my shame overshadow any other feeling.

I’m exhausted. I’m exhausted by the activities I do with you, and exhausted just by thinking of the activities I have to do with you. Every session with the professionals we hire to guide us, ends with some more suggested activities. Frankly, whenever I hear the sentence: “why not do this with him” — I feel like laughing out loud. I feel like asking: “when?”

When am I supposed to play cards games with you? When I’m not helping you with your reading? Hosting playdates in which I’m the middleman, the mother and the entertainer? When I’m not working so I can pay all these professionals I hire for you?

And what If I don’t like to play card games? What if I hate playing with the six-year-old kids I’ve invited for your playdates? What if I can’t make you sit and read with me, because you’re tired and fed up? What if I just don’t have it in me to stop you from watching the same TV show for the zillionth time, because we need to play cards now, everybody says it is so helpful.

I’m tired of hearing:

“He doesn’t look different”

“You know, my friend also has a kid with special needs, and he made such progress”

“Oh, my kid had a special needs child in his class, he really likes helping him”

“Have you tried food additives?”

“You know swimming does wonders for these kids, has he learned to swim yet?”

To conclude, my special and awesome child, you will grow to become a special and awesome adult. I, your mother, am paying a hefty price for this.

Sweetie, my life stopped being mine when your brother and you were born, this was taken into account, but still, I was surprised by how demanding being a mother was. Then, my life stopped being mine, when you seemed different from your brother and the other kids. My life stopped being mine when I took you to child development specialists, to psychologists, to speech therapists. They finally stopped being mine when I learned you have autism. That definitely sealed it.

I’m a better person today. I’m enlightened, as I had to shed some very silly ideas and expectations I used to have about love, children, and success. I’m nicer, smarter, and more sensitive to people, pain and injustice. This doesn’t take away the pain of having to shed a former me.