Every night I read to Emily, give her a kiss on the cheek and say “I love you Em”. And every night she gives me a smile, a little nod and touches her cheek but no words. She has only said I love you (not clearly but I know that’s what she means) 3 times. She is 11 years old and I have only heard I love you 3 times. This is Speech Apraxia and it sucks.

Emily has had speech therapy since she was 18 months old. She has therapy several times a week. She receives therapy at school and privately. And still it is so hard to understand her. She does have single words and couple word phrases that are clear. I have also heard her say lots of words very clearly at speech but for whatever reason won’t use them outside of speech. It is very frustrating for us and her.

I know this sounds like I am ungrateful for the words she has and the 3 I loves I have gotten but I am grateful. I really am. But I am also frustrated, angry and feel defeated most days. I try to help her practice but she wants no part of it. I was able to get her a talking device which she refuses to use. I am tired of trying to be a mind reader to figure out what she wants. I am tired of her shutting down because she isn’t understood. I am tired of worrying if she will still have friends as she gets older. I am tired of worrying if her Speech Apraxia will hold her back from what she wants to do either because she can’t tell us or because she needs to be able to speak to do it. I am tired of wondering what she really knows because she can’t express the answers. Does she shut down because she already knows this stuff and is tired of doing over and over again? Who knows. Only Emily knows and she can’t tell us.

My biggest worry is that she will get lost or wander off and not be able to ask for help. Or she won’t be able to tell them her first and last name, my name, my phone number, anything. She could so easily get hurt or taken. She could never tell someone that she is in danger. This is the hardest part of her Speech Apraxia for me. She could be in a very dangerous situation and she wouldn’t be able to get herself out of it. I really try no to think about this because I when I do, I can’t sleep. I have had dreams of her getting lost. They rock me to my core. I have to get up to make sure she is still in her bed. There is no more sleeping after that.

These are the things that make it really hard for me to accept and embrace her Speech Apraxia. I would do anything or pay any amount of money if I knew it would take it away. But there is no easy way out of this. Yes there are kids that have Speech Apraxia and they conquered it. Will Emily be one of those kids…I don’t know. In my heart, I really hope so. But deep down, I need to be able accept that there is a strong possibility she won’t and that breaks my heart. I truly feel Speech Apraxia has robbed her of so many things and it makes me angry. She already has so many challenges why did she have to have this on top of it? I know kids have it harder than her. It still hurts. It still sucks.

I know I need to work on my attitude regarding all of this. I need to change my perspective. It is very hard. Every day all day long, I am reminded of her struggles. Every day all day long, I need to be a mind reader and a detective to try to figure out what she is trying to say. It’s exhausting. It’s frustrating. It’s heart breaking.

But no matter what, I will continue to support her and help her every way I can. I will keep trying to practice with her. I will continue to try to keep the negativity and sadness at bay. I will try to not let my worries and fears get the better of me. I will celebrate the successes. I will treasure the smiles. I will be by her side always. I will be grateful for all the words she does have because there was a time I didn’t think those would come. She will continue to improve. It will most likely be at a pace much slower than I would prefer but she will get there…in her own time.