"Where words fail, music speaks..."
Hans Christian Anderson
I watch him every morning at his sister’s school. Singing and drumming with his chop sticks on his little red cushion. I see the children gathering, watching and listening. I hear some of them say hi. Sometimes he gives them a nod and continues to sing and drum. Other times he stops drumming for half a second and says hi back. I hear them say he has autism amongst themselves and then say he’s a really good drummer. There’s no actual conversation, there’s just music.
MUSIC IS LANGUAGE
Music is his language. It’s how he communicates best. I say best because he does communicate in other ways, he does speak, but he’s most comfortable when he’s making music.
If you're ever in a supermarket in Jamaica and you hear or see a boy singing in the aisles or in the line, it's probably my son. He sees a room full of people and wants to say hi or make a connection but doesn't feel comfortable doing that verbally so he starts singing. Sometimes he'll sing the Jamaican anthem, sometimes Shout by Tears for Fears, other times its Amazing Grace.
It takes too much effort to speak, to make those words come out. Especially when he’s focused on his music and in the zone. I can only imagine what’s going through his mind when interrupted to answer a question...maybe it's “Why do I have to speak? Can’t you see I’m busy trying to be me?”
To me it seems as if it’s exhausting and frustrating for him, when it’s easier to just sing what he wants to say. At times like this I do what’s necessary - I sing as well, I make up a rhyme, I do a jig or jingle annnnd tada success!
BOOKS WITH RHYTHM, WORDS THAT RHYME
I remember when he was about 2.5 years old and not speaking and we didn’t know what else to do but speech therapy. The therapist gave us exercises that included singing particular songs with him and recommended various books for us to read to him. The books that resonated with him the most were the rhyming ones, the ones that had rhythm and sounded like music to his ears. Books like Green Eggs and Ham and Brown Bear, Brown Bear What Do You See? We’d read these books over and over again and sing and dance to them even. We'd pause at certain intervals and encourage him to say words at particular points. Eventually he joined in, at first with just mumbles and then with actual words and soon thereafter he was reciting the whole book.
He would recite these books throughout the day and sometimes in the middle of the night! We weren't having conversations that a typical 3 year old would have with his parents but he was FINALLY talking.
He can now say "Good morning mommy, daddy, grandma etc," and he will tell you he is "good" when asked "how are you doing?". He will tell you if he is hot, cold, thirsty or hungry and will tell me "happy face mommy" if I look sad. If his sister is crying he'll go to her and sing a song about not being sad. Or if he knows he's done something to upset any of us he will promptly start singing "I'm so, I'm so sorry" which is a little song from one of his favourite shows. Some days you’llactually hear him speaking beautiful complete sentences like this morning when he so politely asked “Valerie can you please tie my shoe laces?”
He's still not able to have the typical conversations an 11 year old would have with his parents or friends but he speaks to us when he wants to and in his own way and we're ok with that, we get it.
I’m not a musician, neither am I a music therapist but as a parent, when I see the magic that happens with music - the windows and doors it opens for my son, I have to tap into it and use it!
Music has always been his biggest motivator. We use music to help teach him new things and it works. He also does drum, piano, and voice lessons. Why? because music is everything to him.
It has built his confidence and developed physical coordination between his feet, hands, eyes and breath. Music has also helped him and continues to help him to express his feelings and emotions which is important, when verbal communication doesn't come naturally for him. So, why not use it?
“I would teach children music....for the patterns in music and all the arts are the keys to learning" - Plato
Parenting is hard - period.
Parenting an autistic child? Extremely hard. Especially if you have other children who are not autistic.
Just take a minute to think about the level of emotions. Think how stressful it is for these siblings.
If you're the sibling of someone with autism, you know how it is. You experience the same things your parents experience. Every day is different and crazy and you never know what to expect. It's stressful, beautiful and chaotic all.at.the.same.time.
My daughter gets emotional at times. She knows that we love her just as much as her brother but she still spirals emotionally when she compares our interactions with her and our interactions with her brother. The fact is, autism parents spend a lot more time with their autistic child, and that's really not fair.
The feelings toward their sibling varies at any given time of the day swinging from love to dislike depending on what is happening.
For instance, they could be feeling like this:
"Why do you spend more time with him? Why do you pay more attention to him? He never gets in trouble! Do you like him more than me? Why does he get to use the iPad more than I do? It's not fair, I want to be autistic too! If I was Autistic you'd love me more..."
Why are those children staring at him? Are they laughing at him? They're staring! Leave my brother alone! He's autistic...he's the best brother one could ever have!
and then this:
Please no singing out loud now...
Leave me alone...
I just want some space...
It’s stressful, overwhelming and a lot to process, especially if they’re younger.
Recently, my daughter came to me crying about it all. She shared her heart and asked "What about me mommy?" She asked me to look at it from her point of view. To consider when was the last time I celebrated her in the way I celebrated the "little" things her brother does. She said, "Mommy, he gets a 'party' when he eats a banana, I eat my FRUITS everyday and no party. I'm not asking for a party mommy, just equality."
My heart broke, but I sucked it up...this was not the time for guilt! I put my autism mommy panties on, validated her feelings and had a frank discussion on how we were going to fix this.
We agreed that
- for the most part autism siblings adjust well, and are more compassionate, independent and easy going;
- over time, if left unchecked, Autism siblings could feel jealous, resentful, discouraged or angry;
- most Autism siblings feel protective of their sibling but embarrassed at the same time, and then feel guilty for feeling that. I know...complex right?
- ALL children need to feel loved and need their parents attention;
- Autism parents or any other special needs parents need to be extra careful to balance things out.
So we came up with a List to help/remind us to balance things out and decided to share it with you. Use it or share it with someone you think would benefit from it.
1. If you haven't already done so, it may be a good time to explain autism to your typically developing child - this will help them to understand and build compassion.
2. Make time for them. Special times that have nothing to do with your child who has autism. You could set aside regular daily times for them, like reading a story at bed time or 10 minutes each day when you tell them a few positive things you noticed they did that day. You could also take them out without their sibling, go to the movies or for frozen yogurt. Whatever they like, just make it special!
3. Encourage siblings to be closer and play more together. Look for ways that they can play, and have fun together. My son loves music, dancing and singing. So we encouraged them to play the Just Dance WII game together and we've noticed how much they've bonded over it.
4.Try to keep things balanced and fair. This is hard but it's important for your children to feel they're being treated fairly and equally. Make family rules that are fair for all. If one child is allowed to do something more than the other, that's not fair. Same rules should apply, if possible.
5. Validate and Manage Negative Feelings. We don't want our children feeling sad, anxious, resentful or hurt. Be aware of their feelings and validate them. Non-judgmental Communication is important so share your feelings too and let them know it's normal to feel the way they do.
6. Encourage friendships outside the family. This will help your children feel they’re more than just an autism sibling.
This is not an exhaustive list. I’m sure as time passes and situations change we’ll think of more things to add or change a few things but for now it’s a start to a happier and more balanced way of living for Autism siblings.
What If I Could Travel Back In Time?
If I could time travel I'd go back to the time when I was terrified of receiving an autism diagnosis for my son.
I'd go back and say hey hun it's me...yes it's you...you, me us...I time travelled and here we are.
I know, it's a lot to take in. Breathe, relax...I'm here for you. I'm here to tell you good things...so listen up!
You're a mother of two amazingly talented children. A boy - who you refer to as your drummer boy, and a girl you lovingly call your "noodle". They're both kind, loving and wonderful children who are happy and do silly things just to make you laugh. Everywhere they go they make friends and leave an impression. I know it's hard to imagine right now but you'll soon see. People comment about their intelligence and immense talent on numerous occasions but mostly they are in awe of their kindness and how big their heart is.
This kind of thing makes you happy. It makes you feel good as a parent and you hold on to this because it's your anchor when you're feeling low.
I know right now you're waiting to see your son's developmental paediatrician and possibly hear a diagnosis for your 3 year old son.
I know what the doctor is going to say, what the diagnosis will be. But before we get to that, before the doctor gives you the news that will change your life, family outlook and dynamic, here's some advice from Future You:
Go ahead CRY
It's called grief. You will be in mourning, no doubt. Mourning the loss of all the dreams you had for your child. Kick and scream, throw a tantrum if you have to! This is inevitable and absolutely OK. Don't let anyone tell you otherwise. Being angry and grieving is nothing to be ashamed of and you shouldn't try and hide it either. You're going to cry in your car, in the shower, on the phone while talking to your husband or other family members. You're going to cry at night when your husband thinks you're sleeping. Trust me, it's ok. Give yourself a day or two to just let it all out. BUT don't let yourself get so consumed with your grief that you miss out on the beauty and blessings you will discover around you and in your children.
Find Your Tribe
Find other mommies going through a similar situation. Joining an autism association or resource centre will help you with this and you'll get lots of information there. These mommies will support you and they will absolutely understand your son and his quirks and make you feel completely at home. It will be a little bit harder with family and friends, they mean well at times but sometimes may not be as supportive or positive because they don't understand. Be patient with them, teach them and guide them as you go along - your children will do the rest.
You're Not Going To Be Perfect
In fact you will make numerous mistakes and that's OK. It will be frustrating but just embrace the imperfections - learn from it and then MOVE ON. No parent is perfect - it's a fact. Find comfort in knowing that no parent is getting it right all the time. Parenthood and parenting is complicated. The quicker you acknowledge this and own it, the quicker you will be to embrace the messy complicated and beautiful story of you and your special family.
Google is Your Friend But Can Be Your Enemy
You're going to be bombarded with what to do and what not to do. Not every therapy is for your son, so do your research and don't be afraid to ask the doctor questions. Remember You are learning and only want to get your son the therapy he needs but don't let your enthusiasm consume you. Find a balance and make sure you have time to interact with your son and get to know him.
Watch out For Comparisons
You're going to interact with typical and special needs families. You're going to see their children's growth track. Don't get caught up in what their child is doing and what yours is not doing. It will be hard at first. Your heart will break, but eventually you'll look at the big picture - focussing solely on your son's amazing personality and unique skills and qualities. Your son's growth will happen for sure, one baby step at a time, and all along the way you'll be celebrating every major and minor achievement.
Play With Your Son and Get to Know Him on His Terms
If he wants to twirl and dance all day long, do that with him. If he wants to jump up and down for 1 hour, just do it. You won't regret it and he'll love you for it. It will engage him and foster trust in him to let you in -which is what you want.
Don't think about it - Buy Him That Drum Set
He is a natural born drummer. You can't see it now, but in a couple of weeks it will be crystal clear where his passion lies. Don't doubt it, embrace it, and surround him with music. Music is everything for your son. It will not only be his lifeline but yours as well. Music and drumming will be like a window into his mind and soul and in fact you will use it to help when teaching him new things.
The doctor will be seeing you in a moment. He will tell you your son has autism and you will eventually get a developmental assessment report confirming this. The psychiatrist will throw in words like "intellectual disability", inevitable struggles and delays, and just a lifetime of him not being like his peers. Please don't be too sad or worry too much about this. Remember I said it's ok to grieve. But don't forget to stay strong. Just believe in your son and trust that everything is going to be alright.
Finally, when you leave that doctors office never forget what I told you at the beginning of this letter. Reread it as many times as you need to. Read it when you're feeling overwhelmed and bogged down with all of his therapies, read it when you're feeling sad or happy. Let it consume you and take over your mind so you carry it with you everywhere you go. Why? because no matter what, YOU are a mother of two amazingly talented children and that's the only thing that matters in your beautiful world.
Gotta run see you soon!