Capturing Nick

Hi there

Just in case you haven't noticed, I have had a wee break from blogging. It's been great!

Nick is fine. I am fine. We are just cruising along, living life in the slow lane with the occasional adventure thrown in for good measure.

I am still practicing my photography. Check out my Instagram if you are interested. I generally post one image a day. You can find me here.

I have been finding it difficult to photograph Nick. He goes into *serious mode* when I pull out my camera! He is also constantly in motion. He blinks frequently and also uses his teeth to make mouth movements. It's quite a challenge to capture him with his eyes open and his mouth/teeth looking natural. :)

Anyhow, I have decided to practice my 'Nick' photography while he is using his iPad. He is conscious of me being in his space, yet he is very relaxed and expressive. Perfect for the both of us.

Watch this space!

April ~ Day Fourteen

Once an RDI parent, always an RDI parent!

The one big pain of going away for a few days is the unpacking that is involved upon arrival at our accommodation. Maybe it is just me!

Of course, I planned an RDI engagement around putting all the foodstuffs away.

We had two large boxes to unpack. First up, I set up a pattern where Nick passed me an item and I placed it into the fridge. When he was comfortable with that, I changed our roles. I passed Nick an item and he placed it into the fridge. From there, we took on the roles of doing the same thing at the same time. We both took items out of the box and placed them into the cupboard. The box was full of goodies and Nick started getting a little anxious, therefore I changed our roles again… Nick passed me the items and I placed them in the cupboard.

What I am trying to spotlight here is the importance of setting up a pattern and then adding variation. I am introducing Nick to different roles and encouraging flexibility with change. I am also being very mindful about his edge+1. If I feel that he is becoming anxious, I will go back to a pattern where I know he feels competent. I then end the engagement on that positive note.

Have a fabulous weekend. I am not sure how ours is going to pan out, as it’s a wee bit wet!

April ~ Day Seven

Friday is for chilling. We do regular life stuff and also just hang out at home. Nick has too much screen time...... and I let it go! Today was also my Birthday, therefore all the more reason to go with the flow.

Autism and Food!

On a recent trip to Hong Kong and Vietnam, I was offered a taste of snake soup. My imagination went wild and it made me feel a little nauseated. I also had a bag of cooked Quail eggs thrust towards me.... I am not good with eggs at the best of times and there was no way I could bring myself to sample one, although I did have fun snapping a few photographs!

Unlike me, Nick doesn't have any preconceived ideas about what he could be eating! However, he is an extremely picky eater; although to be fair, sensory issues most definitely play a role in his unwillingness to try anything new. When I think about experimenting with Nick's limited range of food, I try to take into account my own feelings when confronted with a food that I find scary unappealing. This has helped me to be more mindful of how I introduce new tastes and textures to Nick.

If you have been following this blog for a few years, you will know that Nick's food issues got so bad that he was refusing everything except cereal. I had to take a stand and do something about it. Over time, Nick has come to understand that I have one rule and that is he must try one piece/a small morsel/sample of what I offer him. I don't make a big deal of it and Nick knows that I won't make him eat anymore than that one taste. Having this rule has helped tremendously and his food intake is so much better than what it was two years ago.

I also use the concepts, 'same but different' and 'edge plus 1'. For example; Nick loves Macaroni Cheese. One day I added a couple of cooked peas. I told Nick that he was having the same Macaroni Cheese, however, it was a little bit different because of the peas! Over time, I kept adding more peas and he now gobbles them up with ease. Recently I started adding a tiny bit of finely chopped chicken breast.... and again, I will gradually increase the amount and size of the chicken pieces.

Our food journey is a long story and one that doesn't have an end in sight. My aim is to make it an enjoyable and encouraging adventure.

Autism Awareness ~ Outings

On the spur of the moment I took Nick down to the local cafe for a milkshake. We are regular faces there and everyone is incredibly friendly and accommodating. The waiters are mindful about waiting for Nick to choose his flavour of the moment and even go so far as to bring extra serviettes without being asked.

We have a number of regular places that we visit and the staff generally go out of their way to assist. During a visit to the supermarket, the checkout lady mentioned how much Nick has grown. I was surprised to learn that she has seen him many times over the years and recalls him as a small boy. My bad... I didn't recognise her!

Recently we headed down to a beachfront cafe and I was astounded to be greeted, "Hello Di", by a waiter who I hadn't seen for at least two years. He saw Nick and came over to check if it really was 'us'. I could have hugged him!

As Nick has become more flexible about visiting new places, we are always keen to expand our horizons. In the early days, I used to get such a knot in my tummy just thinking about introducing any form of change. However, these days, we just go with the flow and all feelings of nervousness have gone (for both me and Nick).

Thank you, RDI, for giving us the confidence to spread our wings.

Portugal 2015

Walking the dog....

I bought a dog, a gorgeous, playful and extremely friendly cocker spaniel. I don't know why, it was just a spur of the moment thing. I really didn't put any thought into how Nick would cope with having a puppy around the house.


Sometimes I think, oh what the heck.... my son is autistic and I am tired of putting his needs first. I want, therefore, I shall have! Perhaps this is not the best attitude to have but I do like to be a bit reckless at times? It makes me feel alive and reminds me that I am my own person, not just Nick's mum.


So, we now have a dog and I am pleased to report that Nick is okay. They are not best friends and they both irritate each other immensely. The dog lies at Nick's feet and ends up being pushed away, or, as I have observed on many occasions, Nick will find a dog toy and throw it out the door. Today, no toys in sight, so Nick picked up the dog bed and threw it outside. Gotta love the thinking..... anything to get rid of the dog!


I laughed at myself the other day. The dog was nibbling on Nick's shoes.... which in itself is very naughty, however, this time the shoes just happened to be attached to Nick's feet! My boy was a little bit stressed, so I tried to explain to him what he could do.... "Nick, you need to stamp your foot and say NO!". Oops, he can't say NO. Need to make another plan there! :)


We have been doing the whole puppy training thing and we humans are doing well. The dog isn't doing too badly either. The dog trainer said that we shouldn't be walking the dog out in public until he is capable of walking by our side comfortably and obediently. Sigh, but people, I have to tell you...we live near the sea and we have a lovely long promenade that is just crying out to be walked on. Anyway, don't let on.... we have been sneaking down there and taking our walks.


Personally I think that *dog*, *kid* and *beach front go together nicely. Our weather is conducive to every day walkies and the drive to the beach takes all of ten minutes!


The dog is so good, he tends to stick with us and if he does stray, he comes back when called. Nick is also not so bad. He starts off at the beginning of the walk all grumpy and frantically signing "finished". Half way through he is content and beginning to smile. 

The actual walking can be a bit fraught and this is only something I have learned in the last week. If you think about the mix ~ one adult with one kid and one dog (who in reality is still a puppy). The kid is tall, lanky and covered in spots. The dog is boisterous and dead keen to get that nose working.


Both Nick and the dog listen to me, they stay with me, they crowd me. They are with me.


All is well.... until..... someone waylays the dog. Oh boy, this dog gets a lot of attention. It is very nice, although extremely distracting and of course the dog gets over excited. 


Oh, and Nick has also discovered people! He now gravitates towards people, he invades their body space, he will reach out to touch them on their shoulder. Eeek, this is all very new.


Picture the scene if you will. Dog gets tempted by three adults who are sitting down at a beach cafe. They are showering him with affection and offering water. I check Nick, he is standing there patiently. I thank the adults and gently try to extract the dog. I turn and see that Nick has gone! Oh damn. 


I see him in the distance (he has moved like greased lightening). Slightly ahead of him are two girls on a skateboard, wearing the tiniest denim shorts and bikini tops (just have to mention here that it is mid winter!). Oh shite, I quickly drag the dog from his adoring audience and run off after Nick. He is getting closer and closer to the girls. They sense him and stop to look. They then see me and the dog. I get to Nick and give him a big hug, saying to the girls "sorry, sorry". Bless them, they were so cool and so nice about this big kid who was practically on their skateboard. In fact, they immediately turned their attention to the dog......... phew, the relief!

I have to be honest and admit that I have some good laughs over my son and the dog!


Although it has to be said, by the end of our walk I was very frazzled. I dragged them both off to my favourite cafe. I gave Nick my phone to play with and I ordered one cappuccino and a bowl of water for the dog.

My Reality - comparison fatigue

Yes, you did read it right.... *comparison* fatigue!


I have had an absolutely splendid and a jolly good show of a time with my family in the UK (said with a very fake English accent!).


We have been everywhere, man (gotta throw in a kiwi expression, although it is a very old one!).


Eish (South African word), it's been cold, wet and sometimes wild. Feels very weird to experience a UK summer that is actually colder than our Durban winter!


Really and truly, the time out has been fantastic. I needed some space and I also craved having some time with my first born. It has been great to reconnect with Thomas, without having to take into account the needs of my Nick.


Generally, I live in a bit of a bubble world. My life revolves around my family (of which there are four of us and a dog), school, friends and all that other stuff that happens on a daily basis. I come into contact with children, although I don't spend a lot of time interacting with and/or observing them.


Thus, when I leave my little bubble world and spend some real time on the outside, I get a serious wake up call....


It is kind of like, "Oh shite, so this is what typically developing kids do!" 


I am thinking.. theme park, large noisy rollercoasters, kids running all over the place, yelling, screaming, negotiating, arguing, laughing and having a wonderful time. 


I am remembering the most precious 9 month old boy, who had made the long trip from New Zealand, adapted to his surroundings with ease and then thrust into my arms (a complete stranger to him). There was an immediate bond within split seconds That instant interaction with him was incredible. Oh help, he is more socially advanced than my own child, who just happens to be 13!


A picnic with kids, lots of noisy boisterous boys. A tug of war, pulling hard, moving together against their opponents, team work and laugher. Not possible for my Nick.


Playful cousins, jumping, tickling, rough housing and all that glorious stuff that kids do to each other.


I watched a young man showing his delight at the musicians playing their music on a busy market street. He rubbed his hands together, over and over. I listened to the repetitive sounds that he made. Was he autistic? Who knows... and it doesn't matter. 
.
After a while it gets a bit much. The observations start to hurt a little. The comparison is vast, a massive chasm between regular kids and the capabilities of my son. 


Real time can be exhausting....


My bubble world is reality, although the opportunity for comparison is less. Right at this moment, I am keen for less!

Take a chill pill....

I took Nick and the puppy down to the beach front this afternoon. My initial plan was to go for a short walk, however, for some strange reason my car pulled into a parking space across the road from a favourite cafe. I am forever amazed by my car, she seems to have a mind of her own.... which is actually a good thing! There have been times that I have pulled into my driveway and have no recollection of the route I have taken to get home!! Best I start paying more attention!


There we sat at one of the pavement tables, taking in the sights with the puppy at our feet. Well, I was the one taking in the sights whilst nonchalantly sipping on one of the best cappuccinos in Durban. Nick sat there with big sorrowful eyes and continually asked for my phone! Every now and then I would shake my head for "no" and make some declarative comment to see if he would react about the dog, the people, the surroundings... anything!!! Sigh, he remained stubborn and continued to look at me with those sad sad eyes! I held off for quite a while and Nick coped just fine. I passed the phone over to him when some familiar faces stopped by to say "hi".


Although I live in a large city, our community is relatively small, therefore I always bump into someone I know! Hence the reason for this blog post.....


I am getting to my point in a roundabout way!!!!


I realised many years ago that if and when I take Nick out into the community we are bound to attract some attention. I even organised for my sister to collect me some autism awareness cards from the National Autistic Society in the United Kingdom. You see, I was fully prepared for attack.... if anyone gave me grief, I was just going to whip out a card and silently hand it to the offending person and then I was going to walk away. Yep, I had it all planned!

I still have those cards and I have not handed out even one of them! I can actually count on one hand the amount of times that a member of the public has been deliberately unkind. It was hurtful, it made us angry and we may have made a smart remark..... I can also remember each incident. But, that was it!


I have learned that it is my attitude that makes the difference! The way I am with my child; and the way in which I interact with the people I come into contact with has prevented any unwanted remarks. I smile a LOT. I shrug my shoulders. I laugh with my boy. I say "my son has special needs". I say "my son is autistic". I say "my son has autism". I say "my son cannot speak". If I see people staring a lot.... I must admit, I do give them a bit of a *look*. 


Generally people are kind and understanding. They may think my son is rather odd, however, that is their problem, not mine! Perhaps my skin has got tougher over the years, who knows! 


Being friendly, open and positive has made my life a lot easier. I really do think that having a good attitude helps the general public to be more accepting of children and adults with special needs. Perhaps it also makes them realise that they need to be more mindful of that child/adult who is making a strange noise. I also think that the more I take Nick out into the community... the more the community will get to know him and accept him without judgement.


I remember going to the supermarket a year or so ago... Nick was pushing the trolley and he mistakenly pushed it too hard and it caught the ankles of a woman in front of him. She spun around and made an extremely cutting remark. I quietly said "I am so sorry, my son has special needs". The poor woman was absolutely mortified and couldn't apologize enough. I would rather that the woman went away thinking to herself that she must be more mindful; rather than her go away muttering and moaning about that special needs mother throwing a hissy fit! 


Back to the beach...


The familiar faces that stopped by my table had a good old stare, but so what...... As I was leaving the cafe I bumped into another acquaintance; and we spoke for a little bit about Nick. She also waved to Nick... I like that, I like that people acknowledge my son. 


I also like my lovely lurking friends who read my blog..... Thank you xx

~*~

Magazine article - my personal story!

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!

Zoe

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!! 

Kathy

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! :) 

Niki

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

https://www.facebook.com/notes/michelle-sardinha/autism-brief-for-a-new-autism-parent/287491447954405

The Glasers

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

Marcelle

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.