Monday, 29 February 2016

My son's name is Colby, not 'Autism' and other things I'd like you to know. - An Open Letter from a Mom with a Beautifully Exceptional Child

Today's post on Mombies Unite from Erin is insightful and practical. I love her gentle honesty and perspective. This is a must-read, not just for moms, but for everyone.

Meet Erin. A mom of three exceptional kids (and one with an exceptional difference), Erin brings humour, kindness, and usually a fantastic gluten and dairy free dessert to every situation (how is that even possible?). Not only is she busy raising up three kids with her background as an educational assistant, but she finds time to create amazing kids' clothes, participate in her local church, and advocate for autism rights in Saskatchewan, Canada. Grab a coffee and read this.

Nothing quite prepares you to face a psychologist and hear the words that you feared were true.

"Yes. Your son has Autism Spectrum Disorder."

My mind goes blank. Do I cry? (Lots of that later) Nope. Just sit there shocked. Hearing affirmation about what you feared is comforting and crushing.  And the feelings. Oh the feelings will come. Sometimes so many of them and sometimes none at all.  

Processing a diagnosis for my child is the hardest thing I have ever faced.  

The process of wrapping my mind around it has come with time. The best news is that this child is the same child I held in my arms as a newborn, the same child that made my heart swell when he giggled for the first time. The child doesn't change; it's our own perceptions that change. It's a process. 

And I'm not alone. The chances are that either you or someone you love is going through this too. Support from family and friends can be the lifeboat for a family dealing with those exceptional changes in their lives, but sometimes it's hard to know HOW to help. 

Here are 5 ways to support a family with an exceptional child.

1. Acknowledge the difficulty

This IS hard. 

There is an urge to find the bright side when your friends are discouraged. A diagnosis IS discouraging. We all want our children's lives to be free from opposition and struggles. Everyone gets uncomfortable when we can't offer a solution. While platitudes might make you feel better, they don't change the situation or change life for your friend. Simply sit and listen to your friend tell you about how the "3 Day Potty Training Method" turned into the "760 Day Marathon."

Acknowledging that the struggle is real will speak volumes of love.

2. Love their kid.  

The truth is that we all want people to accept and love our kids. 

The process of seeing doctors and therapists means that sometimes talking about a child with a diagnosis can become very clinical. Data collection, assessments, and video taping geared to analyze you interacting with your own child can start to make you feel like a bit of an exhibit at the zoo!  Take time to talk to your friend's child, hold them, and joke around with them even if they don't have speech. Using nicknames and words of affection are important even if the child doesn't seem to respond the way that we typically expect.

Love can be communicated in so many ways. Loving your friend's child will speak love to your friend. Build into them.

3. Insert yourself into their life.

Life is overwhelming and although we can do it alone, knowing that you have a support of a friend make it easier to handle.

Insist on babysitting their other children while they see specialists or pick up their kids from school when they are running late.  I say INSIST because I used to say 'no' a lot. I wanted people to think I had life under control, but honestly? I felt like a hot mess most places I went between chasing my child to get him out of traffic, trying to keep him from eating all the things he is allergic to, and picking him off the floor in tears at the supermarket because he was way too overstimulated. All of this while feeling very ill-equipped to give him what he needed. It was a huge blessing to know my friends were there for me and with me while I was finding my bearings.

Insist. Be there.

4. Be patient with me.

In a group of other moms some days are just lonely. 

At times I felt more lonely among people than by myself. It was a constant reminder of the milestones we were not hitting. Be patient with me and I will come around. If I seem out of sorts, send me text. Remind me that you appreciate my friendship and that I am amazing.  Heartfelt support is encouraging on dark days when I have been up since 2 am, for the third time this week just cause my son's body can't seem to regulate a normal sleep pattern. I will eventually find my groove again... and coffee, unhealthy amounts of coffee.

Just be patient with me.

5. Educate yourself.

Learn a bit about the disability or the exceptionality... not so you can be an expert, but so you can follow us when we talk about struggles or therapy.  It's nice to not have to explain why certain things are important. Educating every person you talk to gets exhausting -- so exhausting that sometimes you don't even wanna talk about it. 

Knowing a few things will show your friend that you care. 

Be a lifeboat to someone who needs you. Why? Because I can testify to the love, acceptance and community that was built around my family and my son. Our journey has had some mighty fine lifeboats and they have made all the difference. 


Blown away by Erin's post? Show your love and give it a share!

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