Monday, December 12, 2011

Parents to Parents ~ advice for newbies!

Dear Parents


Perhaps your child has just been diagnosed with autism. Or maybe you have been traveling the autism road for a couple of years!


Either way, please be aware that you are not alone! There are many parents just like you. Look for us in your suburbs, your towns or cities. You may have to stretch your wings further and look throughout your country. You will most definitely expand your horizons and look to other countries. If you go looking, you will find some really amazing people, friends who will walk with you, and at times may even carry you.  Be warned, you will also find some wacky and not so wonderful members of this crazy club that we belong to!! Listen to your inner voice.... it will guide you!


I have a child with autism, or if you prefer, I have an autistic child. It doesn't matter what description I use, I still have a child with a disability. He is autistic and his diagnosis is not going to change! I also have this blog... a blog that describes my experiences. I am one voice of many different voices. You might not like my voice but that is ok ~ I am comfortable with that. You have to find the voice that fits you, the one that you are comfortable with!


This blog post is about sharing information. A few words of wisdom that might be useful to you. 


First of all, please take the time to read this post written by Jess, Diary of a Mom ~ Welcome to the Club


You may also like to read these two books!
There are many 'autism' books available, however, these are the two that have stood out for me this year!




If you are feeling a little raw you may find that Gravity Pulls You In is a bit of a tough read. If you don't read it now, save it for later. It is my all time favourite book and it definitely needs to be on your bookshelf! You can find further information here.


The Autism Experience was released this year (2011) and is perfect for the new and not so new parents. I have written a review on this book which you can find here! You will find more eloquent reviews on Amazon or here.


For further information to help you, I have called in some heavies..... Parents who have experienced what you are experiencing. I expect the following list to grow ~ as and when I receive more comments, I will add them to this blog post!


Snippets of information, advice and words of wisdom from other parents.........


imawestie
No matter where in the world you live, "The Autism Experience" is a great book which provides insights into elements of caring for a child as they move through from pre diagnosis, through the diagnosis process, and onto life with that diagnosis. It goes into quite a bit of depth with families from all over the world.


imawestie
No matter how many experts there are in children's health, children's behaviour, children's development, and children's education, there are a much smaller number of experts in your child's health, behaviour, development and education. Mainly, yourself and your partner, and a few more people close to you. If something somebody suggests - probably all in good faith - feels wrong to you then until you get more information it probably is.


Donna
It wasn't too long ago I was the new autism mom and you actually forget those feelings of dread and fear and total confusion that you experienced and with all the different kinds of info out there it is just plain scary. Firstly to tell her she is not alone and that she will survive this! Secondly that research and understanding how the therapies work are very important and thirdly, a mother knows best, trust your mother's instinct, its almost always right. Lastly no question is a stupid question, this was what I was most afraid of.







Jen
I sometimes think of how much more I could have done with my son when he was a toddler. Emphasizing facial sharing, referencing, and shared joy. I would also recommend finding a good doctor to help with the biomedical side from early on!

It takes about 2 years to really get a good handle on what the impact of autism on your child and your family is going to be. Get ready to be told all kinds of contradictory information by different parents and professionals - use your gut instinct to go with the guidance/suggestions of those you really trust. Keep your skeptical spectacles on. Do your own research into interventions and ask lots of questions. My questions are always about what evidence there is that xxx intervention improves the quality of life and life chances for children with autism. By this I mean that an intervention should help children to improve the skills and competencies needed to make and maintain meaningful friendships and relationships, find and keep fulfilling employment and live independently. The last 2 may not be 100% achievable for all those on the spectrum (eg if they have learning disabilities and/or co-occurring conditions) but with the right intervention, meaningful friendships and relationships should be achievable for all. Network, network, network with people who are knowledgeable and have trodden this path before you. Big hugs and good luck :)

Sheraine
It may be overwhelming at the start....but listen to other parents around you...they really know what they're talking about because they live with autism everyday...leave yourself open to advice and suggestions and know that what may have worked for one may not necc work for your child...know that each day you are going to learn from your child as you attempt to teach him/her...don't jump on the band-wagon of EVERY therapy/method of intervention that you hear about....trial and error....chin up...you can do this...the tiniest success will be your biggest reward and reason to celebrate....it gets better as you empower yourself to get involved in your child's life like never before....because no amount of therapy and intervention can be 100% successful if YOU YOU YOU and YOU are not on board!


Me
From my own experience, I would really focus on *engaging* with my child. When my child was a toddler, I spent so much time trying to teach him skills so that he could keep up with his peers, that I forgot about *US*. He didn't manage to keep up with his peers, however, we have *US*.

Kats in Dublin, Ireland
Hi, My daughter was diagnosed just before she was 3 and she is now 4. I completely dived into the autism world (being a bit obsessive myself!) and have read a serious amount of books, blogs, magazines and have done tonnes of parent training. To be honest I probably spend too much time obsessing about reading this and that, ordering certain toys, books, dvds etc instead of just engaging with her all the time and trying to connect. But its all about balance isn't it and I think I'm getting a better handle on it now and what we need to focus on. Good point above from Zoe re it taking about 2 yrs to fully settle into it all. The world of autism is overwhelming to say the least. Of all the books I read, probably Temple Grandins (autistic herself) 'The way I see it' was the most practical and insightful to me. She has a great ability to explain things exactly as they are and has a very matter of fact manner in everything she writes (I imagine this is where autism is an advantage!) 'Ten things every child with autism wishes you knew' - Ellen Notbohm is brilliant and a quick read and great for a newbie. I did the Hanen parent training course 'More than words'. This is a worldwide Canadian parenting training program that consists of 8 workshops. It is hugely beneficial and practical in teaching parents how to get their child to communicate more and how to encourage interaction and communication. I would strongly encourage any parent to look into this. I think all autistic kids should try a GFCF diet for 3 months and see if it makes any difference..then go further if seeing progress. I have dipped my toe into the biomedical approach, but overall I try to use common sense to make sure my daughter is as healthy as possible and absorbing her nutrients. If interested in this the 'gut and psychology syndrome' by Natasha Campbell is excellent or another option would be a book written by a 12 yr old asperger boy Luke Jackson, 'a user guide to the GF/CF diet', which is great and very readable.(Di ~ I have this book if anyone would like to borrow it!) I really liked the DVD 'Loving lampposts' which explores the changing world of autism and debates about autism: is it a disease or a different way of being—or both? Directed by a parent of an autistic boy I would strongly recommend this to anyone interested in the neurodiversity movement or learning more about autism in general. Lastly, I think anyone new to autism must look at a developmental approach; we owe it to our kids - floortime, sonrise and RDI make so much intuitive sense to me. RDI is my particular favourite, I have not signed up yet and this is something I feel very guilty about as time is ticking by but I hope to in 2012. At the moment I work mostly on trying to help my daughter develop fundamental social skills by playing games all the time, turn taking over and over and over and other methods where I try to get her to help with purposeful practical jobs in the house. (easier said than done!) I could write on this forever. Hope this is of some help!! 

Such a great topic to blog about Di! Lots of great comments here! In addition to my own blog on the topic...What is RDI?, I would really stress, like you the engagement piece. One of my suggestions is to make a mission statement for your child...because there is so much advice and as a parent I had to stay focused on what the end result was..long term success. This does not come with just trying to get a child to act a certain way all day, it comes with giving a child a second chance at developmental milestones. The more we come to this realization, the less the crisis will be of our children growing up smart and able to do skills, without understanding relationships or perspective! Start there as a beginning...and everything else falls into place! :) 

Wow Di - where does one start.

My advice to a newbie would to be read, investigate and educate yourself. Don't rely on the advice given to you by one or two people. Every single child is so different that only you as the parent (and usually the mother) know just what is right for your particular child. Learn, keep learning, adapt what you have learnt and keep adapting. The situation is fluid. Never stop learning and never stop adapting. It sounds like a tall order but if you don't your child will stagnate and you will become frustrated.

I do not know if this is good advice but life is not fixed, it is not uniform and by adapting ourselves we are passing on the message of change and learning to adapt to our children.

Michelle


I had to pull back the cob webs of my mind for we have been living with autism for two decades! A couple of big picture things stand out in my mind: 

(1) When pouring through the myriads of ways to address autism, sort out what is remediation (repairing) and compensation (getting around an obstacle). Too much remediation might make the child more frustrated because working through developmental milestones is hard work. Too much compensation may box the family into a corner of not being able to go anywhere or do anything. Practical example: when my daughter was four, I made a point to skip aisles (which caused a tantrum because she craved predictability). Developmentally she needed to learn that change is okay. To compensate, I would alert her to pending change "One, two, three, wheeeeee!" and push the cart really fast to give her vestibular stimulation which calmed her down. Imagine how awful Christmas shopping would be if you could never skip an aisle!

(2) Focus on development and relationship, not what is age appropriate. We try to "catch up" our kids by working on age-appropriate goals that make no sense for them developmentally. The "catch-up" mentality leads to the habit of frustration, meltdowns, tantrums because the child is overwhelmed.

(3) Even if you cannot afford Relationship Development Intervention, three things will forever change how your child communicates: slowing down to the pace of your child to give them time to think, matching their verbals rather than dominating the conversation and making them feel like a competent communication partner, and emphasizing nonverbals and even focusing on one kind at a time until the child is comfortable with interpreting and expressing them.

(4) Try to escape the culture of therapy. Just because a therapy exists and is free doesn't mean you have to do it. Think carefully about the precious time you and your child has. Examine how much your and the child's mental and physical energy is spent in the car, waiting, doing, etc. Is that therapy really paying off in the child's development and well-being. So many things can be done that tap into multiple areas: you can work on fine motor, speech, sensory and relationship skills while doing a chore (cooking breakfast). Find professionals who will help you do that

There is so much involved after the diagnosis...

-Absolutely spend time to get the connection stronger between parents and child. Aaron was so happy on his own, we left him to it at times. It was such a contrast to his elder sister who was a needy baby/toddler.
-For me it was important to do loads of research
-The gluten free casein free diet made a huge difference - it works in some cases but not others, but it is certainly worth keeping a food diary 
-I found a wonderful book soon after our diagnosis about the process of grieving and acceptance of a disabled / special needs child. There are lots of blogs about this now, and I think an important part of the process. I think there are parents who don't go through the full grieving process to acceptance and get 'stuck' at anger or some of the other steps. 
-Know your rights
-Ask for help - the only way to care for others is to get care for yourself
-Start some form of early intervention ASAP, whatever method feels right, but the earlier one starts the better

I think those are the top issues for me...


Stranded Mom
Autism is a chronic life-long condition. Try your best not to fall in to the pit-falls of quick cures and fixes. As with any child with any need, you are required to make a life time investment through your relationship, education, understanding and compassion.

As with any child, a child with autism also grows, develops, learns and CHANGES. If your child is spinning things now, know that he may spin them for the rest of his life, but he will also learn to do many many other things. 

Focus on the big picture. Focus on keeping an open mind and most of all be open to self development, lifestyle change and replace fear of the future with love and appreciation of the now. Basically count, appreciate and celebrate the little successes. Have expectations from your child based on his/her abilities. Find friends and support with fellow autism families. Find strength and hope in the development and learning of your child. Build a relationship based on respect, dignity, love and safety but always keeping in mind the abilities of your child. Find strength in your developing and improving relationship with him/her.

Good luck and ask questions!


Janet
All wonderful Comments!!!
I had a few ideas too Di, nothing wonderful but was just remembering how I felt at the time.
1 Breathe !!!
2 Don't blame yourself or your spouse you are NOT to blame and thoughts like these shift your focus from staying productive.
3 Remember to take care of yourself, this journey is a marathon not a sprint and you need to conserve "energy" for the trip.
4 Read lots of information BUT do NOT believe everything in print, trust your instincts as to what is right for your family.
5 I felt treating my son with dignity was essential and if I saw his spirit housed in a defective body it was easier to engage with him in love and respect.
6 I have loved learning about RDI and am sure the therapy has had an enormous impact in our lives. 
Thanks Di for all you do to encourage Moms like us with our different circumstances.

4 comments:

  1. good advice for the yet to be informed indeed. I found we read just about everything that was available at the time of our diagnosis. Educating yourself is a good step, but the practical advice from others can be worth more sometimes.

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    1. Hi,
      There is so much information out there,it is easy to get overwhelmed with it all. I find other parents extremely helpful... they 'get it'! :)

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  2. great post, di and this quote sums up why we need this support
    "We read so we know we are not alone" C.S. Lewis. (was going to use it for a post but i'll let you borrow it for today!). we are not alone - we have each other and we need that support to get through the day-to-day. thank you for highlighting some useful reading for parents with newly diagnosed children.

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    1. Hi there ever hopeful mummy,
      Thanks for the loan of the quote, I love it! :)
      Support is so necessary....

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