As the news sinks in, I have realized that I am officially a “special needs” mom. I believe that technically, I have been a special needs mom since Harper was born with FPIES, if you are super into labels.
I realize that there are so many parents to children with special needs. MANY of them facing far more difficult things than I will ever face. I do not wish to offend anyone, or to make it feel like a slap in the face. If I phrase something in the wrong way, please KINDLY point it out to me. This is all new to me, and I am trying my best to learn to navigate these waters.
I have noticed a bright side to all of this madness. (My home is full of “madness”, if you couldn’t tell!)
Addison and Chloe have had it drilled into their minds that Harper has food allergies since she started eating real food. Their sister cannot be given anything with dairy. They keep their milk cups far away from her. They are always asking “does ____________ have dairy in it?” “Can Harper have this?” They have learned to look out for her. It has been really beautiful to see this progression in them as Harper grows and explores more.
Now, I have tried explaining to them that we know that Harper does not hear very well. They have known that Harper cannot say words, but that was just “baby sister” stuff. It was normal to them. We have asked them to not try to speak for Harper so that she will learn to say what she needs on her own. We didn’t know that there was any issue other than not speaking.
Scott and I have been working on learning American Sign Language and teaching it to Harper. She can hear and mostly understand what we are saying to her. We have to point and gesture a lot (which I never thought about before..) to get her to follow directions sometimes, but she understands most of the time. When she is trying to tell us something, we are lost. She is trying to repeat the words that she hears, but it just sounds like growling or grunting. We have felt frustrated because she will get upset when we don’t do what she is wanting or needing. I don’t know if she done eating or wants more food, for example.
It is so nice to sign while asking “Do you want more to eat, or do you want down?” and have her respond with a sign. She otherwise would just growl and I would be lost. Both girls have been observing this and so eager to learn along with us. I haven’t forced it upon them, but have encouraged them that they can help Harper out by learning to sign.
Chloe especially has been signing while she talks to us. She doesn’t know a whole lot of signs, but she is always asking what the sign is for words.
Harper’s hearing loss is most likely not permanent. She will most likely have something done that will cause her to hear like “normal” again. But, she will not just catch up verbally over night. She has a long road ahead of her no matter which way things go.
I want to continue learning sign language even if it is no longer necessary for our family. I think the world needs more allies for people with these special needs. How wonderful would it be to have child with hearing loss be able to communicate and make a friend in my children because they learned ASL?! I know that IF Harper’s hearing loss were to end up being permanent, it would mean the world to me to see her make friends who speak her language.
Had my family not been thrown these challenges, even though they are insignificant compared to many others, my girls may not have learned the compassion they have. You can teach diversity and that everyone has different strengths and weaknesses all you want. But when they are faced with it head on, it takes on a whole new meaning. They are daily living it and putting into practice what they have been taught.
It is truly beautiful to see these girls blossoming and learning all about what makes each other special.