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 !

 

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!

Be Nice To The Autism

One of the current goals I am working on with my son is expanding his expressive language. It basically involves using a variety of different prompts to let him know he needs to give me more language.  It started with a verbal prompt, then just a gesture, we then faded the prompt to a facial expression that says ‘you need to expand on that sentence buddy!’ Yes, believe it or not, there is a face for that! Now it’s just ‘wait’ time. If I pause then he knows he needs to stretch out that sentence before I will respond.

It’s been going really well and it’s actually pretty adorable and thrilling to hear him expand on his thoughts out loud.

So the other day Kiddo and I went for a drive to run some errands and we were passing through some beautiful countryside, feeling happy and just enjoying the sunshine.  Kiddo was looking relaxed and staring out of the car window when he made this comment out of nowhere:

‘I’m nice.’

I immediately jumped in with an enthusiastic ‘Kiddo !! Your ARE nice!!!’

Kiddo then repeated himself very slowly: ‘Ummm.. I’m nice ….I’m nice … Ummm… ‘.  I knew immediately I had interrupted his train of thought. The wheels were still turning. He does this at times. Repeats something and I can tell he is still searching. Searching for the words, a way to construct the words into a sentence, and a way to match the thoughts in his head to the words that come out of his mouth. It’s labor intensive for him.

So I zipped my lip and waited.

Kiddo: ‘I’m nice to SOME people.’

A long pause from him then slowly… ‘But I am not nice to some other people.’ I waited again. I could just tell he wasn’t finished. Long pause from him again. He was looking out the window then he turned his head toward me and said ‘I need to be nice to the autism.’  My chest tightened up and I felt the tears sting my eyes.

Kiddo continued oblivious to me trying to keep it together next to him.

‘I need to be nice to my autism.’

Then he turned away and looked out the car window again… lost in his thoughts.   He was finished. The conversation was over.

I said quietly: ‘Yes buddy … I know… It’s so true …’

My boy has not talked too much about autism of late since we explained his diagnosis to him a few months ago. This talk in the car was an exception. It was just the tiniest of glimpses for me into my own child’s personal journey towards self acceptance. No mean feat given the many roadblocks he faces on a daily basis.

What a privilege it was that I got to be there, sitting beside him, the one to witness such a moment.

Be nice to the autism. My autism.

I hear you Kiddo. I hear you.

When Things Go Pear Shaped.

I am going to be upfront from the beginning. This is a post about what I do not post about.

Let me explain.

There are special needs parenting blogs out there written by parents that take a ‘tell it like it is’ approach to what life is like with their child/ren.
I read these blogs. I ‘get it’. It is my personal choice to not go into some of the more difficult day-to-day details about my Kiddo on this blog. There are a for a few reasons for this.

Well … three reasons.

1. My son can read. Not fluently yet… but soon he will. One day he may choose to read this blog and I am mindful of this when I write.
2. My son can talk. It so follows that he can ask questions. About everything.
3. It is his life. Not mine.

So… Yes. Apart from the daily challenges of raising a child, there are absolutely the extra challenges of raising a child with special needs. Some of these challenges are unique to autism. That is a fact.

Some of these challenges are big, some small. Some days are smoother sailing. Some days things go pear shaped and the wheels completely fall off. Some days, even months, are just downright impossible.

But here’s the thing. In the past twelve months I have been pregnant with my second child, I have given birth and I have moved countries. I have set up life in a new house, with a new school, new friends, new church, basically new everything.

I have had ‘glass behind the eyes’ levels of tiredness with a new baby. I experienced crushing jet lag. I would do a 100 jobs a day and still barely scratch the surface of what needed to be done. There were some crazy, scrape -through-by-the-skin-of-my-teeth, yes-I will-be-using-catastrophic-language- when-conversing-with-my-husband kind of days.

Now I no longer reside inside the eye of that tornado. Things are calmer and I am feeling settled. Kiddo and Baby Girl are doing well. This makes me breathe easy.

So thankfully my husband did not write about what things were like when I was having a more difficult time. He did not post it on the internet. It’s hardly news that even though I am in my late thirties and I do not have a disability that yes- I do have challenging times!

My son is six. He has autism. I feel utterly distressed when he is having a hard time. Sometimes answers for him come from my own knowledge and experience, sometimes help comes from other autism mama’s, and sometimes from educators and professionals. Sometimes there does not seem to be an immediate solution and it is really tough. To date though he (and we) have been able to get through and get on with our own version of ‘normal life’.

When it is not my Proudest Moment or my Finest Hour I take it for granted that those hours and moments will stay off the internet and within the loving confines of my family and closest friends.

I want my son to be able to take this for granted also.

The A Word Talk.

I am trying something new today. I am writing this blog post on my iPad. Also I am sitting in my lounge room watching the final flakes of snow melt away as my life returns to normal after five days of snow silliness. For my little family of Aussie sand-gropers snow is a new thing too. I have to say the snow interruption to our regular routine was magical . A true winter wonderland in our new home town in the USA.
Then something else happened over our snow break. Hubby talked to our son about his autism diagnosis.
Just let me fill you in on the back story first. About 3 months ago my hubby and I were faced with the realization that it really was time to talk to Kiddo about autism. He is 6 years old. For a whole host of reasons we just knew it was time. I had also received some encouragement from a fellow autism mama who is a strong believer in self advocacy. Which I am too- but sometimes believing things in theory are easier than making them a reality.
I knew what to say in theory… but saying it out loud… to the little human I care about so profoundly was making me feel… wobbly.
So I did my research. Then I did some more reading. Then I read a few more books. Asked around. Talked to hubby some more. Got some more books out of the library. Lots of good ones. But they were not … perfect.
The main thing tripping me (and hubby) up about the books I looked at was that all of the ones I read addressed the ‘sensory defensiveness’ or aversions to touch, hugs, loud noises, smells etc that some (maybe even many) autistic people experience. My son does not. He LOVES hugs. Loud noises are not a big issue for him. He is all about the rough and tumble of play. I refer to him sometimes as my mover and shaker. There is a name for my Kiddo in this regard- he is a ‘sensory seeker.’ He loves being around people. He loves his peers. He loves excitement, he has no problem trying new things, and is a bit of a thrill seeker. Also my son does not have Aspergers – which some of the books I really liked referred to. I was afraid this might be confusing to him for a first introduction.
So – no surprises really that I couldn’t find the perfect book on autism just for him. The plan in my mind was to write my own story just for my Kiddo. It did not happen. The conversation was raised by Kiddo before I could weave my own Social Story magic!
Given all the thought and effort I put into the process it was a nice piece of irony that Hubby was the one who ended up having the first talk. This is the re-cap on their conversation…
Kiddo asked Daddy at bedtime why he had Mrs G (one of his aides/assistants in the classroom at school) helping him and the other boys and girls did not. Daddy told him it was because he had autism. He told Kiddo that because he had autism that meant he was really good at some things that other kids were not so good at – like riding his scooter at the skatepark. But having autism also meant that some things were harder for him, that he had to work hard to learn those things, so he had Mrs G to help him learn. Daddy said it would not be forever – just for a while – and then when Kiddo was older he wouldn’t need an aide anymore. Kiddo listened intently. Then he said: ‘But I don’t want to have autism. I just want to be like the other boys and girls. ‘

After three months of planning when and how to explain my son’s diagnosis to him- it was done and I wasn’t even there for it. But it happened. I was somewhat relieved, and I was choked up by my son’s response. I know there will be more conversations, but that was the first.
It made me think that over the years, in many ways, things have become easier, but then in other ways … not so much…. Anyone else feel that way?