Saturday, 19 November 2011

Lunch today will be roast beef with a side dish of vestibular stimulation

I'll be the first one to admit that I'm struggling a bit with Max's new 'zest' for life. Please don't get me wrong, I am so happy that we are finally doing a program that is helping him. It's just that it literally happened overnight. Last Monday, Max was fairly passive and vague when I started the Snowdrop Program. Last Tuesday, Max was hyperactive, inquisitive and demanding. I love seeing him so alert, but the sudden change in his personality requires sudden parenting adjustments. He's also teething, so we've had lots of screaming and bugger all sleep. Getting him to sleep at bedtime has become a nightmare. I'm starting to feel as though I'm drowning.

For us, a fairly typical day (lately) starts at 2am, when Max decides that he's had enough sleep and is ready to start the day. It takes around 2 hours to get him back to sleep. At 5am, he's awake again and the day begins. I'm now in the process of changing his sleeping routines and teaching him to self settle. Yes, I should've established this long ago, but the sleeping routine has been kinda low on the list of priorities. You see, one of the issues I have, is that, our therapy schedule is so intense that I often forget the 'normal' baby stuff. (ie oh bugger, when did he last have a bottle???)

On an average day, I complete our Snowdrop program with him twice a day- morning and evening. That involves- deep pressure massage, brushing, tactile and vestibular stimulation exercises, as well as exercises for his visual tracking. We also do some constraint therapy- holding down 'lefty' to force 'righty' to grab the toy. A big component of the program is giving Max lots of exuberant praise. This releases dopamine and that helps to 'cement' the new neural pathways I am helping him develop.

(This is our play/therapy area)

Incorporating different sensory experiences into his day, is a big part of the program.

(This is the 'sensory' box that I've made up for him)

Most days, I make him a 'salad' for lunch. He loves the veggies plus it's another way of incorporating different textures and sensations. The choice of food is important too. Because of the damage to his brain, he is extremely prone to constipation. He also struggles with anemia, so including iron in his diet is really important (and iron exacerbates constipation). Zinc and Omega 3 are both really important for brain development, so I make sure to include that. Plus, there's all the usual baby nutritional needs like protein etc etc

(I've just started putting all of his favourite toys in one box as a problem solving exercise. I call it the 'for the love of god can you please entertain yourself for 5 minutes' box)

Throughout the day, I sing him lots of nursery rhymes. This is to help his language development- there's something about the rhyming that benefits language acquisition (I can't remember the proper explanation!!). I also talk and talk and talk to him, just as if I'm talking to another adult. I pause to await his response as if we are having a conversation.

Lots of kids who've had strokes, struggle with language acquisition and exposure to different languages is extremely beneficial. I purchased some baby sign DVDs that we've recently started watching. I'm a bit annoyed though, that the signs they teach are pretty useless. Yes, he can sign 'stars' but what is the bloody point of that?? He's in bed long before the stars even come out. I'd kind of hoped for something a bit more useful like 'hungry' or 'pain'. Ah well.

I also have some Italian flashcards on my iPhone that we go through from time to time. It amazes me how much he loves them.

We also read stories every night.
We read the same few stories over and over again, as this is the best way for him to acquire language. It's really hard to motivate myself to read the same stories, so I add different sound effects and accents. When I've totally had enough, we change books.

Then, there's the music.....lots and lots of music. Because, music activates both hemispheres of the brain, it is excellent in helping him learn new information and skills. Max LOVES music. He likes Ella Fitzgerald, Louis Armstrong and old school Jazz. He likes songs from musical theatre. He loves his playschool CD. He's also pretty partial to some hard core techno music. And Mozart..... he adores Mozart. As soon as the opening strains of the Concerto for Piano and Orchestra begins, he blisses out.

There's also the physiotherapy and occupational therapy that he needs every day. If I didn't do them, his muscles can easily become rigid and his joints get stiff.

I try so hard to strike a balance between therapy and relaxation but it's tough. Luckily, I've figured out ways to make things most things fun- a few fart noises here and there works wonders. I have a very strict rule that we MUST have at least one good belly laugh each day. I think the twinkle in his eyes and his killer smile, speaks volumes.

Exhibit A

Exhibit B

I enjoy every second that I spend with Max- ok that's not entirely true at 2am. But, at the same time, I'm so damn tired. I recently got some advice that really hit home "this journey is a marathon, not a sprint".

At this stage, I'm not quite sure exactly how to put this into practice.

The shuttlecock was meant to be a tactile toy. Apparently it also makes a pretty good pacifier ;-)

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  1. Faith, you are so beautiful!

    Your COMMITMENT is just incredible.

    You really do make me feel so proud to know you, & as for little Max, one day he's going to know he won the parental lottery.

    In fact, that twinkle in his eye makes me think he already knows it :)


  2. Hi faith, found your inspiring blog via Cherie! What an inspiring mummy you are. My kids have been dx with ASD and we work with baby sign and Makaton too. I know some great DVD's that are PRACTICAL! They are available (from what I've found) in the UK from the ABC shop. They are called the 'something special' series and can be ordered online. It's on my blog somewhere... I'll dig up the link and send it to you! Xx

  3. Faith, I too have linked into your blog a few times via Cherie! Your commitment is incredible, I feel slightly exhausted reading all of the daily activities that you do with Max and truly know that he will become an amazing person due to your perseverance and will appreciate everything that you are doing!

  4. Faith, me again.

    Here is my blog post:

    And here is the direct ABC link:

    Hope it helps x

  5. Wow. This is what we do on a 'quiet' day!! Thanks for the lovely comments and thank you for the link. At the moment I can't do Internet shopping cos I left my credit card in an ATM, so it's been cancelled :(

  6. Carly, I just checked out that link. Those DvDs look fantastic and SO much more practical!! The ones I bought teach words like 'stars', 'moon' and 'turtle' . When the heck is Max gunna need to use those words at (nearly) 8 month old???

  7. I agree Faith, we want our kids to 'communicate' to say what they want, what they like and how they feel! So glad I found these DVD's too.... Now I just have to get our DVD player working again LOL hope you get your credit card sorted.... I love online shopping, beats the stress and sensory nightmare of the mall x

  8. Faith you and Max are so inspiring . Your boy is gorgeous and your efforts will see him achieve much more than you imagine .