In Search of a Book Title.

I am pleased to say there is movement at the station and my #KazBrooksBook project is coming along very nicely.  I am super excited!.

Kiddo at the Beach (a possible book cover photo) !!

Kiddo at the Beach (a possible book cover photo) !!

So the back story to this post is that I left Hubby to handle things on the home front last Wednesday night and I went out with friends and had adult conversations and laughed a lot.  The conversation turned to the topic of my writing and then to book titles.  So here are the ideas that were talked about at the table with my friends and now I am turning them over to you. Yes, you! I would love to know your thoughts and receive feedback, either by writing the number of the book title you like the best in the comments or feel free to play around with the title and the tag line and give me new ideas.  I am open to any and all suggestions!

Proposed Book Titles are:

#1 – At the Skatepark & On The Spectrum: Dropping In On Autism & Early Intervention.

#2- Engaging Kiddo: A Mother’s Story About Parenting her Young Son with Autism.

#3- As I Held My Breath: Parenting & Life on the Autism Spectrum.

#4- The Way We Roll: Parenting, Autism & Family Life.

#5- Snack-food, Sunshine and Skateparks: A True Story About Autism, Early Diagnosis & Early Intervention.

#6-Parenting a Young Child on the Autism Spectrum: Stories, Tips, Ideas & Inspiration from a Mother & Her Son.

thoughts, feedback…go! Muchas Gracias amigos!

Take Me To Church. 

In case you were wondering , yes I was taken to Church! 

I loved going to Church as a child, and I always assumed I would do as my parents had done for me. That I would take my children to Church. After my son was diagnosed with autism the simple exercise of going to Church became challenging. A lot more challenging. Especially in my son’s younger years. 

I spent some time recently with a wonderful lady who is passionate about disability and church inclusion. I learnt so much from listening to her share about the work she has been involved in at her church to achieve this.  I thought about my own experiences and came up with a few ideas on how churches and faith communities can excel at loving, accepting and embracing children and adults with disabilities and their families. Here goes…

1. Listen. Churches need to listen to the parents, the siblings and the person with the disability. Really listen. We all desire to be heard and understood. Validating the journey is so important. Disability does not last a week or a month.  For many people it will last a lifetime so listen and continue to listen. Keep an ongoing dialogue. Church leadership and/or appointed key Church volunteers need to make a time to meet with the person or family, and at a location and time most convenient to them. Start with asking the question: ‘how can we serve you better?’ Don’t assume. Don’t pass the buck. Communicate and Listen. 

2. After listening comes a decision to make a heart change. This starts with the Church leadership. Make the attitude adjustment. I mean really go there. People often support the idea of inclusion until they actually have to make a change, or they find themselves outside of their comfort zone. Accommodations may be needed for that family or that person. The temptation may be to only think about the costs. Or the inconvenience. Making the decision to have an attitude change will make the practicalities of true inclusion and real acceptance so much easier. 

3. The National Organization on Disability found that  85% of people surveyed (both with and without disabilities) state their religious beliefs as being important in their lives, but only 47% of people with a disability attend Church at least once a month. What can be done to remove the barriers that prevent church members with disabilities from attending? I would encourage Church leaders to meet with its members, do some research, brain storm, set goals and make a plan to remove any and all of these  barriers. Check out the website disabilitiesandfaith.org – it has links to a range of faiths and denominations and loads of great info too! 

4. As Hubby says to me: ‘it’s not ‘them’ and ‘that Church’, it’s ‘us’ and ‘our Church’. I know what it is to be in Church leadership and I know what it is to be a Church member. Church leadership absolutely has an important role to play in setting the tone for an inclusive and welcoming culture. However it has been everyday church members, those without a title, who have often made the most positive difference to our Sunday experience and to our overall sense of wellbeing and belonging in our faith community. If every church member can ask ‘how can I serve this family or this person with a disability better?’ …then love has legs. And that is truly a beautiful thing.

5. Parents and Carers can feel isolated. Caring for a person or a child with a disability can be tiring. Practical help is always a blessing. In the case of my son his disability is not physical and can therefore be ‘hidden’ or ‘invisible’. If the Church can show kindness in practical ways it can make a huge difference. Making and delivering a meal, free babysitting, a cup of coffee waiting at church free of change, carrying a mom’s bag into church, helping someone to their car, watching a child after church so mom and dad can fellowship. Showing kindness in small and practical ways can be incredibly meaningful. It certainly has meant a lot to me. 

6. Don’t say stupid things if you can possibly help it. Think before you speak. As the old adage goes: If you can’t think of anything nice to say…well… You know the rest. 

7.  Say things like ‘Thankyou for making the effort to come today’, ‘You are doing a great job raising your child’, and ‘We are so blessed to have you here today’. Address the person with the disability. As a parent I don’t want people’s pity and I also don’t want be the reason somebody else feels like their life is not that bad. I always want my faith community to love and value our Kiddo.

8. My child is going to grow into an adult- true story! I want him to know and be assured of his place and value in our faith community both now and in the future. Having some of the young and older men in our church reach out to greet and connect with my son means the world to me and Hubby. Ted and Craig are two men in my Church who talk to Kiddo every Sunday. It blesses my Mama heart every time and I believe Kiddo feels accepted because these men treat him with kindness, dignity and respect. Yeah it even makes me teary. These men are the real deal in my book. 

9. Having a Children’s Program that can cater for children with special needs. My friend shared with me how she trained volunteers to be ‘shadows’ for children with disabilities, only stepping in if needed. She organized for each child in the program to have their own basket made up with instructions for the volunteer and other supports like visuals, schedules, fidget toys, favorite toys and even light coverings for a child who had struggles in that area. I believe children with disabilities should be included in the regular program to the fullest extent possible. I do not believe the parents should have to miss Service on an ongoing basis to make this possible. Yeah- see Tip #2. 

10. Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest’ [Matthew 11 v 28 NLT.] I don’t have a disability but I am sure it can cause one to feel weary. This promise from Christ Himself is one I would love to see fufilled for all people with a disability who come to Church. That they would experience it as a place of rest, acceptance, inclusion and love. Wouldn’t that be a wonderful thing! 

I would love to read about any ideas you have to add to the list. Or any experiences you want to share are always welcome ! 

Going Primal! 

I am honestly enjoying the process of writing my book so much and I’m super excited to see it coming together. A huge thank you to all of you who have been cheering me on! The following is an extract from the book that I wanted to share with you. The Chapter is entitled: Going Primal! 

Here goes….

My normally laid back and easy going self switched into a different gear, one I didn’t know I had. Kiddo at sixteen months of age was different to how he had been three months ago and I was overcome with a primal determination to find out why. Once a Mama goes primal- watch out! 

The answer that was slowly dawning on me was that autism had happened, or was happening. People have said things to me like ‘well, a Mother just knows’ and ‘you have a teaching degree, of course you knew what to look for.’

Both are incorrect. I didn’t ‘just know’. Infact I knew nothing about child development.  As for the teaching degree I had majored in social science and religion for high school aged teens. A world away from infants and their behavior. 

My formal counseling training in self awareness and self reflection was the one part of my educational background that helped me a lot on the road to a formal diagnosis. I had learned to examine my thought processes, record them and know that I could really trust them, and therefore trust myself.

I was going to rely heavily on this skill over the next few months as there would be many educated health professionals that would lead me to second guess myself. 

I would hear things like ‘lets just wait and see’ and ‘he is just being a boy’. Also ‘you are being an overly anxious first time mother’ and my personal favorite ‘your child does not have autism… If he has autism I will eat my hat’.

That assessment came from a medical doctor.

Well- That’s it! …. Just a small sound bite from the book. A short post I know- but I also needed a reason to share with you this gorgeous pic of Kiddo I took recently  Xx Kaz

Ps – have a great week !

 

Five Funny Things Kiddo said this week

My Kiddo says funny things a lot. I decided this week to write them down because i just don’t remember things otherwise. 

So here are the top five funnies of the week: 

1. Kiddo lays down on the bed next to his cat who is napping (as cats do).  Of course Kiddo is meant to be brushing his teeth. I hear him whisper to his cat Brobee (FYI- this name was bestowed on him by the cat haven where we adopted him) 

Kiddo: Brobee, you are like a beautiful black egg.

Me: an egg?!

Kiddo: ok maybe not an egg. Brobee, you are like a beautiful black rectangular prism.

Me: ok – lets go with that! 

2. Walking into Barnes and Noble together:

Me: I am feeling old today Kiddo. You have to walk slowly. I am tired. 

Kiddo: walk slowly?! what?!

Me: When people get older they have to walk slowly. Hey Kiddo- when I am super old will you take care of me and look after me?

Kiddo: Yes Mom- when you are 44 years old I will do this for you. I will take care of you. 

Me: perfect! 

3. Driving in the car with Hubby, Kiddo and me:

Kiddo: Dad, you are so strong, and you are so big, and you are so handsome, and you are so gorgeous! 

Dad: Hey, what about Mommy? 

Kiddo: Mom… Well she is just COMPLETELY NUTS! 

Dad and Kiddo crack up laughing. 

Me: you know I’m holding the two of you responsible for that. Just saying! 

4. Easter Sunday Church Kids Presentation to the Congregation. The kids are waiting to begin their song and there is a few weird crackles coming through the sound system. Everyone is quiet then from Kiddo in a loud voice:

‘What is that noise?!’ 

Nailed it Kiddo – it’s exactly what we were all thinking!

5. All four of us having morning cuddles in bed: me, dad, kiddo and baby sister:

Dad: we have a wonderful family. I love my family! 

Kiddo: we are a family. We are an autism family. (Cuddles for everyone).

Ps: a little update on my blog to book writing…I am in the thick of it now and it’s going well (insert hand clapping here!) I am looking for a couple of volunteer draft readers to give me feedback on the overall direction and vibe of what I have written so far. Please comment below if that’s you🙂 otherwise comment anyway on your favorite funny line from Kiddo or something funny from a Kiddo you know and love xx

Blogging from A to Z 

I was inspired this morning after reading a post on Unstrange Mind and saw she has taken on the  ‘April 2015 Blogging from A to Z Challenge’ (see http://www.a-to-zchallenge.com/ ).

The challenge this brave blogger has taken on for the entire month of April (except for Sunday’s) is to blog through the alphabet on autism- related topics to celebrate Autism Awareness Month. 

My contribution to the month and to April 2 which is Autism Awareness Day is to give you, the reader, a choice of some of my favorite autism blog posts to read. Your challenge is to pick just ONE to help increase awareness and acceptance of autism! I’ve picked some good ones! 

If you have time please share with me in the comments which one you read. I would love to know🙂

Here are the posts I chose for you for Autism Awareness Day:

Autism and Oughtisms is a blog written by a mother who is also a lawyer. She can slice through the tough autism topics like nobody else. I hope she blogs forever. Read: https://autismandoughtisms.wordpress.com/2011/07/25/has-autism-versus-is-autistic-a-muddled-debate/

Sparrow Rose is a brilliant writer and an autistic adult. Read ‘A is for Acceptance ‘ on her blog: https://unstrangemind.wordpress.com

This is from Bec at Snagglebox. I share this post frequently. It can help save lives. http://www.snagglebox.com/article/autism-wandering

Jason writes about faith, his family and autism. Check this post out: http://www.jasonhague.com/2015/02/05/a-letter-to-my-autistic-son-on-his-9th-birthday/

I stumbled across Carrie Cariello more recently. This post is perfect about her take on what causes autism: http://carriecariello.com/2015/01/19/i-know-what-causes-autism/

Bacon and Juice Boxes is written by Jerry (aka Mr Bacon) and he is my kind of writer. As a parent he validates the struggle, gives dignity to his son and can also make you laugh out loud! Head over and read this from him- http://baconandjuiceboxes.blogspot.com/2014/12/whatever-it-takes.html

Last but not least – one from me about inclusion : ‘As I Held My Breath’ https://kazbrooksblog.wordpress.com/2012/09/24/serenity-courage-and-wisdom/comment-page-1

Love Kaz 

For Real!

What’s been on my mind lately you ask?

Why thank you for asking! The answer is quite a lot actually.

I am finding the older my son gets (which oddly enough also translates into the older I get) the more reflective I am about where we started, where we are now, my son’s development, my own growth and the many opportunities that have been afforded my son and my family. My firm belief is that a number of these opportunities rank right up there in the rarified air of the miracle zone. True story. And I am grateful beyond words.

For me a recent ‘grateful beyond words’ moment looks like this:

I was at Subway with Kiddo. We ate lunch there and had a conversation that went like exactly like this:

Me: what are you thinking about Kiddo?

Kiddo: I am having a bad thought Mom!

Me: what do you mean?

Kiddo: I am thinking a bad thing!

Me: O really- and what is it?

Kiddo (deadpan face and a twinkle in his eye) : I am thinking I am going to kick your butt Mom!

Me: O really! That’s pretty funny Kiddo – maybe I’ll just have to kick your butt first!

Kiddo: (deadpan face explodes into hysterical laughter): No Mom! Please don’t do that! Hahahahahahah! Don’t kick my butt!

Let me insert the necessary hashtag here #gratefulbeyondwords

That recent trip to Subway ticked the following boxes for me with my seven year old: we ate AND had a conversation at the same time, he ordered his own Sub, he counted out the money to pay for his Sub, he used his manners, he followed directions, he was calm, he waited at the table by himself while I had a quick bathroom break and he walked to and from the car in a safe manner. And it all was no big deal.

My flashback touchstone are the visits we used to make to the hairdressor five years ago to get Kiddo’s hair cut. It.Was.Not.Good.  Let’s just say we used to let his hair grow as long as we could between cuts. These days… Haircuts? No big deal at all. I mean Kiddo actually giggles now when that previously dreaded razor buzzes near his ears. Yes – giggles!

So in the middle of all my feelings of gratitude towards all the wonderful people and opportunities that have been afforded to my son and our family, I made a decision.

Drumroll please!!

I decided to take all my bloggy words and thoughts and ideas and roll them into a book about all the things I wish I could have read about in the first couple of years of my journey with my son. A book that is informative, hopeful, helpful and life affirming.

So I’m out of the starting blocks with 25,000 words on the first draft now written (not that I’m counting or anything!).

Thank you to my friends Jessica and Shazza for punching my fears in the face on my behalf and helping me to do the hardest part. Get started.

Please feel free to send encouragement my way! Now that I’ve told you I want to do this I am going to have to follow through.

For Real!

A Candlelight Vigil

This week in Oregon, USA a child was tragically murdered by his mother.

A group of mothers, headed up by Lorraine Ball, from the online community known as Portland Autism Moms have organized a candlelight vigil this Saturday November 8 in Portland, Oregon to rememeber this child. His name is London McCabe. Although we did not know this boy or his family personally we have all felt impacted by this tragedy.

At the end of the formal part of the vigil around 7:00pm, there will be a balloon release. If you live locally you are invited to join us for a 6:15pm start. There will also be an online vigil. Or you may choose to, in your own personal way, honor the life of this little boy.

The words written by me below are to be read out tonight by Lorraine during the vigil. After this I will be reading a prayer I wrote for the vigil. I hope to post a copy of the words of this prayer at some point soon.

A Candlelight Vigil for London:

Thankyou all for coming to this candlelight vigil which is being held to honor and remember the life of six year old London McCabe.
We would like to welcome all of you who are here as part of our diverse autism community; friends, parents, and children, and the many more who have come out to remember London. Thank you all so much for coming.

This vigil for us is about a number of things.

We want to show our support to the family and friends of London McCabe. Our deepest sympathies are with them. Our love, thoughts and prayers are with them in their time of such unimaginable loss and heartbreak.

We also have taken this time to honor the life of London. We have very deliberately chosen to not focus tonight on the tragic circumstances of the death of this little boy. This vigil is about his life. We understand there are more conversations to be had, but we would ask that these be put aside for tonight.

Tonight we ask that you would focus your energies on remembering the light that was London’s life, his big smile, and his sweet spirit. Many among us have chosen to wear hats in his honor because he loved wearing them so much.

We also have with us candles which will be lit in his memory, and then at 7:00pm we will be blowing bubbles and releasing balloons. Six white balloons will released as a symbol of London’s innocence.

Tonight, in the hearts of people all over Portland, vigils are being held. We are also thinking of the Newport community who are holding a vigil and will be releasing their balloons at the same time as us.

We also acknowledge those who are unable to attend in person but are part of an online vigil.

We are also very mindful that we are part of a much larger autism community, who right now across the globe are taking the time to remember London tonight.

We stand together as mothers, fathers, children, families and people united in our desire to celebrate and honor the life of one little boy. He has touched the hearts of so many of us here. For so many of us he reminds us of our own children.

While are hearts are heavy with grief, our hearts are also hopeful that our autism community would shine with a light that only gets brighter. Both locally and globally our hope is that the autism community would be a place where we can all draw strength and security from each other.

We stand up for our children. We stand up for our children with autism and we stand up for the autistic adults who live, work, love, and contribute so much talent, joy and uniqueness to the world. Our message to society at large is a simple one.
Our children’s lives matter.
Autistic lives matter.
London McCabe’s life matter’s to us.
We stand as a community, strong in love, for London tonight.
Rest In Peace London.