A friend like Henry

I have just finished reading a book called 'a friend like Henry' By Nuala Gardner.  Its a book about a mothers journey with children with autism, main focus is on her son with severe autism and how a pet dog broke into her sons world and he began to learn to communicate.

I found the book an emotional read and it reminded me of the harrowing tantrums of the earlier days and the difficulties we had faced.  I could relate to the frustrations of other peoples comments, and the sadness how she had to fight for her sons diagnosis (as autism was not highly recognised back then).  This lady had to overcome many obstacles in her life but it gave me hope as i read through the book how her persistent effort really paid off and her son was able to mix well with society and had many great accomplishments.  Years later, when she finally was able to conceive again, her daughter was also diagnosed with autism but at the completely different end of the spectrum - which is where my son is.  She was amazed at how much had changed in terms of acceptance and diagnosing but its still a long waiting game.  This quote from the book, stood out for me:

'When we were facing the most challenging aspects of Dales behaviour all those years ago, I'm sure i we'd have jumped at the chance of dealing with a child at the opposite end of the autistic spectrum disorder, but Amys superior ability with language didn't necessarily make our lives any easier.  Because she was able to manipulate the situation or obsession and interrogate us about it..... this made handling Amy even harder.  With Dale once he was'programed' he adhered to family and school rules, which made dealing with him alot easier in the long run.  As far as Amy was concerned, you had to jump out of a cake to motivate her to do something and then let her eat it - or at least have a consistent reward system in place to reinforce the message.  We have therefore learned that it doesn't really matter what level of autism you are dealing with; it is how an individuals particular autistic traits impact on their life that is important'

I always remember thinking that my son wasn't that bad and thankfully he could verbally communicate so it was ok, it could be a lot worse.  Thats not really the case, we have many challenges because of his ability to be so verbal.  I remember someone telling me 'that its a bit like cancer in the sense that it doesn't matter whether its breast cancer or brain cancer at the end of the day its all cancer.  The same with autism - it doesn't matter which end of the spectrum its still autism'.  We have difficulties to face that other children do not, we have to adapt our approaches and have had to change our goal posts, in terms of what we expect.  It's hard when others meet him that have a set idea of what an autistic child should be like and then they dismiss it as he doesn't meet 'thier' criteria, but for that moment in time he may look like he's the same as any other child but actually you have no idea of the preparation and work we have had to go through in order to get him to that place.  There can be discrimination between whats expected between a verbal and non verbal asd child.  Just because they have words does not mean they communicate in the same way as everyone else and will have the same traits as a non verbal.  These traits can't be ignored just because they speak.

My son does have friends etc and we do meet up with other people but this is really hard work for him.  It is not natural for him to process the hidden meanings and facial aspects of communication.  It is not easy for him to meet new people or be in new surroundings.  He has to process all this information.  He does not have the social imagination to cope with different set ups of familiar surroundings.  He can find the sensory element of a new place overwhelming.  He has to work really hard at all of this and which is why he finds change really difficult.  He does become tired quickly and we find that short bursts of successful communication is better for all of us.  By short bursts I mean a morning or afternoon activity followed by rest and some time out.

Although the book was emotional to read I'm glad i did, it gave me a broader perspective of life on the spectrum and the end of the book was a summary of the experiences through Dales eyes.  Now a grown man he was able to verbalise why he did some of things he had done.  He was also able to communicate how grateful he was to his supportive network.  I do sometimes feel scared of what the future holds for us and for our son, whether a 'normal' life will be possible, so reading Dales perspective was very encouraging and showed how far he had come.  It is amazing to read what he had overcome and how it was achieved.

Week 2 of the hols!

Week 2 and not done too well in taking photos this week - will try and remember for next time.  B (asd) is still transitioning into the summer break.  We've had some hard moments this week so am thankful to friends who have helped us out and gave me a break! (hubby has also been mad at work doing days, evenings and weekends so not been around to help)

Monday - Indoor play centre

Tuesday - Popps meeting for SEN statement, which meant I was very thankful for a kind babysitter for my 4 boys especially as the meeting went on for a lot longer than planned. Afternoon =  swimming lessons...

Wednesday = Met up at a friends house to play

Thursday - Met up with friends for an indoor picnic (not so great weather)

Friday - B was at disability break - sailing and kayaking for the day.  The younger children and i had a restful, chilled out day playing at the park and at home together.

 

So inbetween the activities, we do different things.  My younger children like playing with their toys - we have lots of different toy boxes so they often just choose a box.  N wants to be a spy so loves these imagination games along with action figures.  J just uses his imagination and plays his own games, Lego or joins in with what N or L is playing.  L loves balls and also the music box.  We do activities together like crafts, me reading stories or baking cakes.  All the children like outdoor play so we sometimes go on the scooters or grab bats and balls and play in the multi use games area outside our house.  We limit their time on the computer for 30mins and although I was going to set a limit for the TV too, i find i need them to watch TV to allow me to make the dinner etc or some quiet time whilst Lu is napping.  Thankfully they are not really into the TV so it is not on very often whereas they would spend all day, everyday on the PC, wii and ds consoles.

B is different as he doesn't just play, he doesn't know what to do, so at home I have to constantly feed him activities to do.  Which is exhausting and partly the reason why we go out and try to do something everyday.

Having B away for the day is a real rest bite for all of us. It was so nice for the other boys to play and interact together. B does try to join in with his younger siblings but his need for structure and routines means he normally bosses the younger ones around, enforces new rules to their game and they then give up playing as its no longer fun.  His rules are his way of understanding the game.  It was very hard getting B to go to his activity (even though he had chosen to do it) and very worrying for me to see him so distressed but he's with people who understand his condition and not shocked by his behaviours.  After lunch when i realised he would probably make it through the day I finally relaxed. It was nice to chill out.  It was good to spend time with N,J and L at the park and at home. It is a different atmosphere and a good break but that's not to say its awful when he's at home, its a change and it does us good.  When we picked up B he had, had a great time.  He was calm and relaxed and I felt he had really done well at overcoming his anxieties and actually having a successful day - he of course promptly reminded me of the treat i promised if 'he gave it a good try'  which of course he had done.

This week the boys have also been writing out their Christmas/birthday lists as that season will be upon us soon.  J's birthday is beginning of September so I normally plan and get things ready at the same time.  After him there is a flurry of birthdays and events taking us through to the new year and beyond.  I find time seems to speed up in the run to Christmas and being prepared early helps keeps my stress levels down and i can get better bargains.

So thats what we've been upto....

50 things to do... Summer challenge!

The National trust posted an article on 50 things to do by the time you are 11 and 3/4 for fun i thought i'd re-post and see how well or not well we are doing and it can also be our new family challenge for the summer!

1. Climb a tree
2. Roll down a really big hill
3. Camp out in the wild
4. Build a den
5. Skim a stone
6. Run around in the rain
7. Fly a kite
8. Catch a fish with a net
9. Eat an apple straight from a tree
10. Play conkers
11. Throw some snow
12. Hunt for treasure on the beach
13. Make a mud pie
14. Dam a stream
15. Go sledging
16. Bury someone in the sand
17. Set up a snail race
18. Balance on a fallen tree
19. Swing on a rope swing
20. Make a mud slide
21. Eat blackberries growing in the wild
22. Take a look inside a tree
23. Visit an island
24. Feel like you’re flying in the wind
25. Make a grass trumpet
26. Hunt for fossils and bones
27. Watch the sun wake up
28. Climb a huge hill
29. Get behind a waterfall
30. Feed a bird from your hand
31. Hunt for bugs
32. Find some frogspawn
33. Catch a butterfly in a net
34. Track wild animals
35. Discover what’s in a pond
36. Call an owl
37. Check out the crazy creatures in a rock pool
38. Bring up a butterfly
39. Catch a crab
40. Go on a nature walk at night
41. Plant it, grow it, eat it
42. Go wild swimming
43. Go rafting
44. Light a fire without matches
45. Find your way with a map and compass
46. Try bouldering (rock climbing outdoors but with safety mats and short drops)
47. Cook on a campfire
48. Try abseiling
49. Find a geocache (use GPS and other navigational aides to locate hidden containers.)
50. Canoe down a river

Well i'm hoping as we're staying in the UK that throwing snow, will just not be a possibility! also as mine are still quite young, some just aren't practical yet or seasonal but lets give it a try and see how we do!

Well, Week 1 of the summer hols is over! we've survived.  I thought I'd blog about what we've been upto and share some photos.  This week we've had amazing weather so....

Monday - Beach day with friends at Hamworthy Park

Tuesday - Walk and play at Bourne Valley, playing at home, making cakes and the paddling pool.

Wednesday -  Vets, boys cashed in on their pennies and was allowed to spend their money. N bought a big Chelsea bun and B a crab fishing net. Then met with friends at Sandbanks Beach

Thursday - Crab Fishing then home to paddling pool

Friday - Walk and play at Bourne Vally, meeting with friends at the pirate themed park (Canford Cliffs)

I guess we've been out lots but after what feels like months and months of rain and grey, enjoying the sunshine and the heat was an opportunity not to be missed.

Its been quite a hard week for B as he finds it very difficult to adjust from school life to home life and being on summer holidays, due to his ASD.  We have used sequence cards before we have left home to explain what we are doing and when we'll be coming home.  This helps him close the loop on his communication.  I have found it stressful as he expects me to structure every minute of the day (similar to school) and when i can't or am attending to another child's needs, inevitably the meltdowns start.  There are issues everyday, normally I'll plan the big things but forget the little things and that's when problems arise. He is adjusting to life at home but its hard work so we've been using the timeout spot and reward charts for our 3 older children.  I prefer the use of positive rewards to encourage good behaviour.  Also it is a good parenting aid, making sure I'm being mindful to catch them doing good and to praise them for it...

Toffee taking N for a walk

Building with marshmellows and dried spaghetti (quite tricky)

My handsome bunch!

My Baby is 2!

Well my youngest is now 2 - i can't quite believe it, where has that time gone? We didn't celebrate it on the actual day (as daddy was working away in London) so we saved it for the weekend.  It was very strange doing nothing on the actual day but at 2 years old we could easily get away with it and daddy really wanted to be part of the celebrations!

We celebrated with lots of presents, cards, Mcdonalds visit and then a trip to Gus Gorillas, Poole Park.  He absolutly loves balls and this play area has the most ball pits.  We had dinner and a Peppa Pig birthday cake (his next big love) - the cake didn't look great but tasted good.  We all enjoyed his special day!

 My Little Baby is a fully fledged Toddler!

Summer half term fun

Here's some pics of our half term. We went to Cornwall, Polperro and the weather was, well, wet but we made the most of it!

Our Midweek break we went to the Eden Project, on an adventure walk, Porfell wildlife park, explored nearby towns and beaches.  We ate cornish pasties, cornish ice cream, meals out and had fun together!

The Diagnosis Part 3

Originally my appointment was in July but it was re-scheduled after the MDH meeting, due to consultant being ill. However they did not hold off from sending the letter out detailing the conclusion. I remember opening the mail thinking it was another appointment letter - I was certainly used to receiving these - however it was the conclusion letter. 

I read through it shaking and it was agreed by all professional bodies that he met all six criteria of the triad of impairments and that Autism Spectrum Disorder (ASD) was given. Due to the fact he scored very highly on his academic abilities (Very Highly) and his language skills were not delayed, it was felt that Aspergers Syndrome was the appropriate diagnosis for him.  In short, he's autistic.

I didn't expect to receive this information in a letter (to be fair, neither did they) and I did feel very shocked. I was surprised to feel shocked as we had been through testing for over a year, had always known he was different, yet it was now finally official. I think I just thought 'oh its just mild, he won't ever get an official diagnosis'.  Suddenly it happened and i was now in that place where I felt the grief and had to come to terms with the reality.  My husband though was very expecting of this outcome and was happy that the diagnosis had come through as he had expected. From how we initially reacted, the feelings had now been reversed.

I don't know what i expected from the diagnosis as nothing actually changed, its just now we have a reason why he behaves the way he does. Also it does mean we have easier access to help.  ASD is a life long disability, it is a brain development disorder affecting his communication, there is no cure but it does not mean there is no hope.  There is also no known reason why ASD happens. 

It means we have to work harder and teach things that other children just get. It means we have to change our approach and move our goal posts. It means we have to not care about other peoples judgements and know we are doing whats best, even though it looks wrong to others (sometimes alot easier said then done). We've had to throw out the parenting approaches we learnt from all those books and TV programs (for this child) because now we are dealing with a different set of rules.  It means theres a lot of pressure on parenting and teaching him social norms to help him be a successful adult.  It means I go to lots of appointments now and see different specialists (which I am grateful for).  It means I have to be free to care for my son 24/7 even during school hours because sometimes he needs my support in school.  It means I may need a babysitter in the day while i sort out a volatile situation and I'd be grateful for the offer of help :) It means a lot of preparation for any changes or new events.  I'm learning all about social and moral stories.  It means he's allowed to do things in a different way which others may look upon as unfair treatment.  It means that the rest of my children sometimes have to watch violent and difficult behaviour as we learn to best support him, which means they too may act up.  Its not easy as an adult to deal with, so it is hard for them.  It means I'm sometimes quiet in the school playground, wondering whats coming next and I'm tired as i have a lot on my plate.  It does not mean I am unhappy, aloof or unfair.  I am really grateful for all my children, I love them to bits I am so thankful to God to be a mother.

It also means I have an amazing son that sees the world in a completely different light, that's not bound by social norms, so will just say what he thinks, when he thinks it.  I have a son that has amazing learning abilities who looks at me like there's something wrong with me, as i don't know what 'h' is on the periodic table (think its hydrogen or helium). When he gives me the atomic number, i have no idea what element he's talking about and he thinks i'm weird. It means I have no chance of outsmarting him with numbers or science but I have lots of other things I can teach him.  It means I get to see and experience the world from a different perspective, one I thought too scary to imagine - I'm conquering my own prejudices about disability that i didn't even realise i had, had.  It means i am learning a lot more and meeting some lovely people along the way.

Through the assessments, I learnt a lot about my child and it gave me my parenting confidence back. Also having other children I can quite clearly see the differences and I can see how normal parenting strategies work and empower children and parents.  The diagnosis was long and thorough but worth it. Although it can be hard walking into the school playground wondering what's happened today, at least now i can give a reason for why it happened. It doesn't take away unacceptable behaviour but it gives others understanding.  In short we're just at the beginning of our journey of living life on the spectrum!