A Speech about No Speech…

Max will be 5 very soon.  He has no words.  He has never said Mommy.  He has never said I love you.  I know he shows me,  I’m the first one to rave about the many ways he does.  He’s my lil guy, my angel…I love him bigger than the universe…bigger than time…and my lil guy doesn’t speak.

When he was 2 my husband started saying “Maybe he’s mute”.  I was SO horrified at the thought of this.  But 3 years later he still doesn’t speak.  We had a beautiful SLP before getting him into Pre-k.  She did great work with him.  We didn’t get to see her very often as they have so many lil ones to manage and so little time.  Again a wonderful SLP in the school system but she had so many kids on her list and so little time.  We moved in August.  We have a great place to take our son and have been waiting for an SLP to start working with him there.  It hasn’t worked out and now I am desperately phoning people on a list sounding like a pathetic begging fool to please meet us.  PLEASE WORK WITH MY SON…what I don’t say is please be dedicated, loving, patient, kind, and have a spark with Max.  But this is what I want.  I want someone amazing…I want someone who LOVES him …who sees him…who can challenge him in a safe, loving way…who has experience and time and integrity.  PLEASE WORLD let me find this miracle worker….I just want to hear “Hi Mommy, I love you”  I want to hear what his favourite colour is.  I want to know why he loves Slimfast bars so much.  I want to understand his love for Gordon Mr Engine #4.  I want to ask him how his day at school was and help him with stuff that is bothering him.  I don’t know how his day was other than a few things they tell me.  They.  I want to know what HE has to say…what he loves and hates and wishes.  What do you wish my sweet boy?  If I could have anything for Christmas this year I would like to know that my son will start working with someone he loves in the New Year.  That they will devote a regular space for him to work on his speech.  That he will enjoy it.  Work at it.  And do his best as he does with everything he’s ever faced.  How can our non-verbal son be almost 5 and not have an SLP?  Why didn’t I get us on every waiting list I could when I moved?  I feel so sad and disappointed in my naive hope that everything would just happen.  If I can pass on any good advice here it would be to get things set for your kids.  Be in control.  Don’t assume.  Things won’t always work and you need backup plans in place because EVERY single service and therapy takes time.  You need to look ahead and call ahead and ask questions and keep on top of things.

My son will speak one day.  Even if it’s using an iPad.  However he will be able, he will tell me he loves me and I will wait.  I just don’t want to be the reason he waits.

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2 thoughts on “A Speech about No Speech…

  1. This made me cry! I feel so sad for you and for Max and for all the Autism Moms and kids out there that could accomplish so much if only the right help existed AND came in bountiful amounts! I feel like I’ve lost years of help for my big boy because of all of my naive assumptions! Maybe other parents reading your blog will learn from the assumptions, so here are the ones that let me down: I believed when I was told what I would get! I thought an aid in school meant a 1:1 aid to help my son with his work, tailoring the teaching methods to his learning disability and unique learning style. I thought the aid would be trained in Autism and in how kids with autism communicate, learn, socialize. i thought this aid would help him to fit in with other kids – helping him to communicate and helping the other kids to communicate with him. i thought he’d be safe and would be watched as well as he is at home! I thought the speech therapist that he was to receive at school would be educated in autism and would be able to work with him. The reality is, his “aid” has no special training and has to babysit 23 other children in addition to him. Recently the school lost my son, and will just let him out at the end of the day whether I am there or not to collect him at the sound of the bell, despite his tendency to run. They don’t care! My son is not assessed in any unique way – if they ask him a question and he doesn’t answer they assume he knows nothing and continue to give him the same baby work day after day while he grows more and more frustrated. He can read and write and count well past 100, but they have no idea. His teacher recently brought bean bags to school to entertain him! At home, we entertain him computer programming and science projects. At school? Bean bags! His lessons are the same as every other kids. nothing is changed for kids with learning disabilities! No one helps him to socialize or helps others to socialize with him. recently we threw his 6th birthday, and out of his entire class of 23 children only 1 showed up. We had a bouncey castle and minecraft everything! It was awesome! But no one saw it! My big boy who is never excited about anything asked for this and helped plan it! Only 1 kid from class showed! Heartbreaking! The speech therapist has seen my son a couple of times a year and it pretty much goes like this: she tries to talk to him and he doesn’t answer or melts down because he is scared of her office. So she gives up and states, “I can’t work with him”. Teacher: “I can’t engage or work with him”. Aid: “I can’t engage or work with him”. Meanwhile, my son has major sensory issues and is afraid of everything and has no regular OT. Had I known all of this 3 years ago, how different my choices would have been! BTW all of the professionals sate this is the best place for him!…getting lost and left behind. And oh yeah, i didn’t even mention the time outs instead of sensory breaks! That’s basically the same thing, right!?! Disgusting!!!!

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  2. Beanbags. Yes. This is a good example of the lack of understanding that seems to surround too many people who may not realize how lucky they are to work with our boys. If only they could understand and be able to use that understanding to engage our kids while secretly uncovering their secrets. It’s funny how many times you can flick the switch on our new bbq lighter….over and over and over…hmmm not working…throw it out…..WAIT I have to simply press this lil button while flicking the switch…ahhhh FIRE!!! It can be SOOOO simple to uncover the magic right???? It can seem impossible sometimes. But this job isn’t for quitters. It’s for people who need heat when they’re cold and don’t want to freeze…they’ll never ever ever give up…..and wow those people who stick with it and make learning happen when it feels like fun, they are GOLD…our son would light up when Christine, our first SLP, would come out to greet him in the waiting room…she knew how to connect with him and that was step one. Then she would find out what made him happy and use those things to get him pushing out any sound he could…then she would praise him and praise me and my efforts…she was the real deal. I glowed with pride every single time I took him to work with her. If only a lady/guy like her was guaranteed to work with your child anytime it was discovered extra supports were needed. I don’t get the aid thing…I was so lucky with pre-k and the aid we had was an angel herself just like Max. A special soul we were just too lucky to cross paths with. We got lucky that year. But again the school system doesn’t guarantee you will have a 1:1 aid! If I had him in public school here I have heard some of the tales of disappointment! Our kids need aids. They need them to be with them 100%. They need to have the tools to work with our kids and some extra education in kids with special needs or all kinds…They need to understand Autism. I don’t know about you but I think if I were an aid and I was assigned to a class with a child with autism I would find out all I could about them and what his challenges are?? Isn’t that basically just doing your best for your work? Not to mention the family you’re working to help and child you’re guiding and keeping safe? I am not one to judge and don’t assume I know everything there is to know about it all as I’m just a mommy of one child with Autism. But I DO know and hear a lot of stories from other parents, that our kids need MORE!!! They deserve better! They are our future!!!
    Thank you for sharing this -the truth is not pretty.

    Like

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