The Magic of Development Delays

For quite a while I have wanted to write a post about how development delays create an emotional struggle within parents, more specifically within myself. For any parent there are days that are a complete struggle. Now add to that seeing four different therapists in the last two weeks, tracking while not judging every move your child makes, knowing that no matter what well meaning friends say your child is behind…they do things differently…there are challenges only they will face, struggling because your toddler hasn’t said any new words for 8 months yet they understand a billion new concepts, being a total helicopter parent even though you would really rather not…fact is your child just needs more help, and seeing that confused look from inquiring parents at the park “how old is he? oh… same as mine.” To be honest some days feel like poop, some days you wonder if they will ever move forward, some days you cry.

IMG_2997_fotorThen some days… the magic happens.

The last month has held some wonderful development leaps for our little guy. It is the most freakin AMAZING feeling to see him discover another layer of being. I can not really explain how elated you feel when missing pieces of the puzzle begin to fall into place for your child. Yes all parents get this joy when their child reaches a milestone, but for parents of children with delays it is different.

It is different because for months, or even years, you have been watching for certain behaviour. You have been watching because you are highly aware and knowledgable due to the countless therapy sessions you have attended and articles you have scoured. Then BOOM there it is!!! and like a waterfall affect 50 more things fall into place, because that is how we learn. One foot in front of the other, one process leads to the next, the metamorphosis has a cycle.

Oh holy cow it just makes you so damn happy! Picture me skipping around the beach, ridiculously heavily pregnant, following my little man who has all of a sudden become focused on digging, tipping, pouring, sorting, posting!!OH MY!! We fill bottles in the ocean then run back to collect shells, he sits engrossed in play for an hour. A FREAKIN HOUR! A whole hour of focus where I haven’t needed to console him, save him from drowning or entertain him. No, we have just explored and played and felt joy.

IMG_3173_fotorThen this week NEW WORDS!!!! What the? did you just say? Oh gosh you did and look you said it again and that is a sound you have never made and there is two more words that sound similar and you are using them correctly and LOOK AT YOUR SMILE!

I know all parents have felt the joy, but I am sorry… it is not the same. So to all those out there who have struggled through the emotions of development delays, HOORAY TO YOU. Hooray to those moments when your heart swells and it swells for your children who LIGHT UP with the new discovery that has come to them with more time and effort then others realise exists.

These are the days when magic happens.

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Hitting a medical storm

The 20th of March was Boston’s two year cranioversary, two years since his big operation that went really well. What an amazing two years it has been, dotted with new experiences, awesome achievements and very little in the way of big scary medical stuff. The 20th of March was also the day we found out there is a whole lot of that big scary medical stuff on the horizon, including another cranial vault reconstruction.

In paediatric intensive care unit after his first cranial vault reconstruction in 2013
In paediatric intensive care unit after his first cranial vault reconstruction in 2013

I recently wrote a post about The Ocean of Emotions that we ride as part of Boston’s journey with Saethre-Chotzen Syndrome. I talked about the tidal wave that had just hit and how it can be overwhelming. Now I feel like we’ve moved from tidal wave to some sort of roughest seas on earth situation, where the waves are MASSIVE all the time and you just sort of begin to feel immune.

SPLASH yup there is intracranial pressure and Boston’s brain is too big for his skull….SPLASH we must create more room so another cranio reconstruction surgery needs to happen in the next two months, sorry what? your second baby is due in two months?…SPLASH we have to cut the really successful silicon sling that holds his droopy eye open, so there is another surgery that will need to be redone….SPLASH we need an MRI under anaesthetic before then and observations by the neurosurgical team…SPLASH also something strange is going on in this part of his head, maybe it is also affecting his spine. OKAY OKAY I am freaking drenched already!!

A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples
A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples

In my head that is what the meeting felt like. In reality everyone present was really supportive, helpful and positive…we even had a few jokes to lighten the mood. After two years of relative calm it feels like the next six months could hold the mother storm, in my heart I know it won’t really be that bad, after all everyone has the ability to find happiness no matter the situation we are facing.

Already as this new challenge begins I find myself being motivated to reach out to other members of the rare disease and craniosynostosis community. My thirst for knowledge surrounding these challenges is uncovering new information and building a better understanding of what our son will go through. We’ve been brainstorming how to navigate the rough seas in the most efficient, relaxed and positive way. Reaching out to family and friends, making lists and checking them twice, finding time to meditate and reflect. Reminding ourselves that through this time we will be guiding Boston on his journey but we will also be welcoming our newest arrival earth side.

I guess what I am getting at is for those who feel like the sea is just too darn rough and you are drenched to the bone and…lets face it… sometimes you feel like telling the world to GO GET PLUCKED…there is always a silver lining (for crying out loud there MUST be)… and maybe it is just time to build a bigger boat.

That is the bit of inspiration I am selling, and I am sticking with it 😉

A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
A nice reminder of how quickly we heal. This is a couple of weeks after major surgery

Our unique learning paths

I recently came across an article about four homeschooled/unschooled siblings and how they learnt to read. I loved how it conveyed four different approaches to learning the same thing, four individuals and their unique learning paths.

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Puzzle…Why should we put this together when I like pulling it apart?

Our week has involved some situations that have me pondering the differences between how each child learns. As a mum of a little champion who has been monitored by physio’s, OT’s and doctors from birth I am all too aware of “normal” milestones and “normal” steps in achieving task A,B or C. Now as Boston gets older the emphasis of early intervention starts to encompass activities and situations geared toward school preparation.

You can do your head in worrying about the certain way your child achieves tasks (and to be sure… my head been done in quite a number of times). I can only imagine that when children reach school this is amplified for almost every parent as monitoring and testing becomes part of life, while the ability to cater to individual learning styles and paces becomes challenging. These days we have SO many labels and disorders and learning challenges. ADHD is a commonly used term  and research shows prescriptions in Australia for Ritalin and its equivalents went up 300 per cent in seven years, in America over 6 million children take these drugs for educational purposes. We become concerned when our children act differently to the pack, we worry about their ABC’s and 123’s from an earlier and earlier age. We can become completely freaked out preparing them for school. We worry that they won’t be able to concentrate enough to learn in a class room environment, that they will be left behind, become a disruption or the target of bullies. That they will be labeled below average and what exactly will that label do to the way they view themselves. So we bend over backwards to help them keep up with the norm, we stress ourselves and our children with monitoring the “right” and “wrong”. We work against what is flowing naturally for them, potentially we work against the things that make them happy.

And…I have to wonder whether we are creating a whole lot of stress over simply fitting our kids in the “normal” box.

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Learning about the loud sewing machine with Granma

Now here I must say as the parent of a child who has quite a few labels to his name I do value the benefits of therapies and early interventions. Yup I am on the fence. My mind shifts between two paradigms (Yup it’s confusing up there, come join us for a mad hatter party some day). There are wonderful passionate people working in these fields that are a blessing to many parents. The tools one can gain from therapies are amazing…but I just do not want to use those tools to make a “normal” box…I want to use them to make a Boston Box.

The more homeschooling/unschooling stories I read the more I see how “normal” it is that every child learns differently…yes even siblings… in the same house… with the same teacher! I am addicted to these stories, these heart warming stories of children who were allowed to learn in their own way at their own pace, and who consequently genuinely love to learn. Just like I am addicted to seeing Boston find his own unique path to learning different things, in his own time, with some tools we have been given and some he has brought to the table all on his own. I am aiming to find a balance between utilising interventions and allowing Boston to find his own path. How? well that I am still figuring out, but for us it will be about being as aware and tuned in as possible to the individual person he is, constantly striving to apply the tools we gain from therapies and all walks of life in ways that support his unique learning path.

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Exploring reef life with Dad

I would love to hear from those of you who are striving to embrace different learning paths. How do you stay tuned in? What little actions lead you to try different things? and for those with children who have complex needs and have experienced interventions what are your experiences and emotions heading down the sometimes confusing path of what is “normal”