This is Autism

I have been on blogging break recently.  I gave birth to my adorable Baby Girl four months ago.  Then three months ago I moved with the family from Australia (back) to the USA.  Yep! Trust me…. it has been an adjustment.  We are still adjusting. One day at a time.   

Monday-November 11th 2013:

2:58am—Kiddo wakes up and calls out for me to lie next to him.  This has been a pattern for the past week or so.  Sleep is an ongoing struggle for my five year old (almost 6) Kiddo. I get up and go and lie next to him.  My back has been hurting since I gave birth to Baby Girl.  Plus Kiddo’s bed does not have a pillow-top mattress.  Pricing pillow top add-ons is on my ‘list of things to do’.  This  will allow me to lie next to my son in his bed without being in pain.  I am also aware that Hubby is bone-crunchingly tired and I want to try to let him sleep.

3:30am—Kiddo is still awake.  I give him some melatonin (or as Kiddo calls it ‘sleeping medicine’) to try and help him drop back to sleep. Baby Girl wakes up ready to feed.  This ends up taking a while and Kiddo starts calling out for Daddy this time to come and lie next to him.  Which Daddy does. Kiddo has been so anxious lately with all the changes that managing this anxiety has become a priority for us.

4:00am—I finish feeding Baby Girl and then struggle to get back to sleep.  I am worried about Kiddo and school.  The staff at his new school have been great, but Kiddo is pretty stressed out and his behaviour at school communicates this.  We are doing all we can to support him.  He is trying so hard.

5:05am—Kiddo finally falls back to sleep.  Daddy returns to his bed and falls asleep. I go back to sleep.

5:58am—Baby Girl wakes up for the day. She is all smiles! I get up with her and start our morning routine. Coffee is my friend.  Drive-through coffee is awesome too.

starbucks

6:30am—I am on the couch with Baby Girl and the iPhone. I begin researching possible activities for Kiddo to do today.  I am thinking of a family outing into the city.  Always gotta have a plan in this house! A day with no plan is just not good for Kiddo. Or us. Period.  Then Kiddo wakes up and bursts into the lounge room with joy: ‘Hi Mum-It’s me! I am back!’ .  Gorgeous!

7:00am-Kiddo watches TV. When the show is finished he looks out the window, sees the sunshine and exclaims with total excitement: ‘What a day! I am happy today. I feel good.  Sunshine! What a day! No school today.’  I respond to his total enthusiasm with ‘That’s wonderful Kiddo. I am so glad you feel happy today. I feel worried when you are sad and upset.’ Kiddo: ‘I am sorry mummy. I will try again.’ Me: ‘That’s OK Kiddo.  I am proud of you. I know you are trying.’

the sun is shining

Some days lately he is not so happy. There have been many meltdowns.  This boy of mine really does try so hard to ‘manage’ and regulate himself, his emotions, his body and its need for movement and input. This ‘management’ of his body and emotions is not only internal but also external, including contending with noisy, busy, highly verbal environments, bright fluorescent lighting and the general chaos of life and all its demands.  It’s a full time challenge for him….and our family.

8:21—Kiddo sits down for breakfast and starts looking under his chair. Me: ‘What are you doing Kiddo?’ Kiddo: ‘I don’t have a seatbelt’. Me: That’s funny! You don’t need a seatbelt in the house, only in the car.’ I smile at our cute conversation.  These days there are so many cute conversations. I don’t take it for granted. Never ever.

I sit down with Baby Girl on my lap while Kiddo eats his cereal.  I show Kiddo my sore finger.  I seriously have no idea how I hurt it! I ask him what should I do to make my finger feel better. Kiddo: ‘Go and see a doctor.’ Me: ‘I think I might ice it and see if that helps take away the pain.’ Kiddo: ‘Give me a try..Give you a try...(I wait – I know he is searching for the correct word)…Give IT a try.’ (yep-he found the word he wanted.) Word retrieval. Another struggle for Kiddo. Now my finger is numbed with ice I am pain free.

9:08—Hubby is up now.  It’s Veterans Day in the USA and he is home from work. Kiddo says to us at the breakfast table: ‘I feel HAPPY!!’. Me: ‘Why are you happy?’ Kiddo: ‘Because I am happy.’ Me: ‘But why?’. Kiddo: ‘Happy for mum and dad!’ Me and Hubby: ‘Awwww! Thanks Kiddo!’ I see Kiddo looking at Baby Sister…I can see he is searching for his words again…he says slowly: ‘Glad. Glad for Baby Sister.’

baby sister

9:31–Kiddo bounds over to his new ‘Angry Birds’ card game and asks Dad to play with him.  He has just started to play card games and board games this year. He loves it. He loves numbers.  Anything math related-he is in! Bingo and CandyLand are another two favourites. I love playing these games with my son. I feed Kiddo his vitamins while he plays and hand Hubby his coffee.  I put Baby Girl to bed for her morning nap, pack a cold lunch for Kiddo, load Dad and Kiddo into the car for a trip to the Skate Park to ride their scooters, and I crawl into bed for a morning nap. By this time I am hurting. I need sleep.

12pm—Dad and Kiddo come home from the Skate Park.  Hubby is exhausted and crawls into bed for a nap.  I am up with Baby Girl and do some cleaning while Kiddo has downtime playing games on the Ipad.  They are not educational games. Purely downtime…for him and us.  

IMG_1116

1pm—the Ipad dies. It wasn’t plugged into the wall properly.  I help co-regulate Kiddo who is very upset.  I wake up Hubby and we start getting ready to head out again.  All four of us this time.

2pm-4pm—We drive downtown to explore the city.  Kiddo loves it.  We drive around and find a park to visit.  I wait in the car with Baby Girl who is sleeping now and Hubby plays a high energy game of ‘chasey’ and ‘sharks’ with Kiddo and the other kids at the park.  Hubby is so animated I can hear him from down the street!

IMG_1136

5pm—home. We are all tired now.  Kiddo is much less verbal/non-verbal later in the day.  Also he is not responding to anything verbal.  We switch to visual supports about now.  Also his movements are more unpredictable.  Everyone is feeling.. ratty… it’s a challenge to stay calm and its a race to the finishing line (bed time).  

We drop past the shops to grab dinner.  Kiddo plays games on Dad’s I-phone while we wait in the car.  A phone call comes through. Kiddo answers the call and says : ‘I don’t want you to call me. I am trying to do something.  I’ll call you later. Speak soon. Bye-Bye now.’   Too funny! I laugh out loud and congratulate Kiddo for doing an awesome job answering the phone.  He normally just hangs up on whoever calls him when he is playing his games on the Iphone.  He giggles at my laughter.  I cant wait to tell hubby the good news! This is progress is our house!

The ‘night-time routine’ begins: Bath—dinner—Lego—Angry Birds card game (it’s usually TV  but Kiddo is loving his new game so we switch it out)—melatonin—brush teeth—toilet—read book—bed.

7:30pm—Kiddo is upset and crying.  Hubby’s phone died while putting Kiddo to bed. Kiddo calms eventually and is asleep by 8pm. Baby Girl goes to bed at 8pm.

8:00pm–Hubby has a work meeting. I write this blog post.

11:00pm–Bed. Hubby and I talk about the possible 3am wakeup and make a plan for this.  Tomorrow is a school day so we know Kiddo will be feeling anxious.

11:30—Baby Girl wakes up. Time for a feed. Before I know it its midnight.  There are some common themes in our autism day-to-day. Sleep. Communication. Planning.

Please feel free to share the keywords/phrases that form a ‘theme’ in your household…

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20 thoughts on “This is Autism

  1. Dear Kaz,

    Thanks for keeping it real. I love your capacity to give dignity to the day to day wrestles people face in their efforts to to do ordinary things extraordinarily well. You are a wonderful example of this.

    lotsoflove

    Hubby.

    PS I hope I don’t de-legitimize the post through my subjectivity. 🙂

  2. What a terrific glimpse into your daily life. It really blessed me to be able to experience it in some small way, and I loved the conversations with B – he is an amazing kid. You are wonderful parents! I hope you are more settled and hopefully more rested now, but praying for you. Happy Thanksgiving to you, family! xoxo

    • Thanks Michelle. Glad you enjoyed the conversations -I love them so much too – its just so hard to remember all the things that get said in a day I had to write them down! Thanks for the prayers and encouragement… and Happy thanksgiving too!

  3. Awesome…it reminds me of younger days, dealing with one daughter’s allergies and another’s fear of the dark. No time for sleep but blessed just the same ❤ :^)

  4. To see where you started and where you are now – it’s amazing. You guys inspire me. We are starting a similar journey, and I take courage from you xx

  5. Karen, so beautiful to hear a day in the life of your family. It’s beautiful to hear how Kiddo is progressing and managing growing up on a day to day basis, but also to gain insight into the challenges you embrace in addition to the enormity of adjustments to a new baby in the house. Sometimes we take the little things forgranted. Missing you guys. Give our love to hubby. Huge hugs to you all. XX

  6. Awww. Sorry to hear you are in pain 😦 but wonderful to hear how Kiddos language is surging forward. I can see you all giggling and enjoying the moments. What busy days your family has and what wonderful memories you will build with all that family time. Thanks for sharing in your beautifully poignant way. xxx

  7. A great read Karen! Love the little conversations (I really should say big!”) I can remember those kinds of nights where you’re up with one and then feeding the other – it does get s bit easier, when the younger one sleeps through… I think I just went into robot mode…. You are both doing an amazing job and Kiddo is such an awesome kid as no doubt Baby Girl is. He has left such an impression on his classmates back in Oz – they still talk about him – and his name badge is still on his bag hook :-). Miss you guys heaps xxx hope you get some sleep too!

  8. Love this Kaz. Thanks for the honest day-to-day insight for your family. I can’t tell you how many times I giggled and ‘awwed’ during this – the way you express your journey is great. You are both are doing such a great job. Hang in there and be encouraged.
    xx
    ps. I LOVED 9:08am – he is just precious!

  9. So good to have you back blogging Kaz.

    You are an exceptional communicator – so brave and vulnerable at the same time.

    And what I especially love is how you embrace both the joys and challenges of autism.

    It reminds me of The Great Teacher who wanted to wash his Student’s dirty feet. At first the student wouldn’t let him touch the dirty feet (because he felt unworthy) then he wanted his whole body washed (because the teacher said fixing problems was part of his own Identity).

    But the teacher rejected both extremes and calmly said “I only need to fix what needs to be fixed, and can leave everything else just as it is” (paraphrased).

    I love that balance! And I love that in this blog teaching you communicate both ways to fix what can be fixed (e.g. using visual supports later in the day) with celebrating the “just as it is” (e.g. “this is progress in our house”).

    You do it so extraordinarily well 🙂

  10. Thanks K for being so inspiring. You guys are so amazing. Thanks for keeping everything so real and honest too. A truly remarkable family! Love you guys and massive hugs family xo

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