An Unfolding

 

Being a parent of a child with special needs is many things, but dull it isn’t. Well at least not for me! I am constantly having mini-awakenings – small aha moments as the meaning of my child’s diagnosis unfolds a little more day by day.

                One such unfolding occurred this morning when I realised that while we have spent Malakai’s life so far doing everything we can to afford him a ‘typical’ development and will we will continue to do so, the opposite of this is also coming into play now. Like a yin and yang or push and pull, I have realised that there are some things we simply cannot improve on.

                We can (and have) helped Malakai to develop in amazing ways – and I believe this is because I have never placed a ceiling on what he’s capable of. I have never thought he was incapable of something simply because of his Down syndrome.

                But – and this is a new but… I have realised that there are some things we simply cannot push him to be or do. There are some things we simply have to accept. And I know I am sounding rather cryptic here, so let me give an example.

                Walking into school…

                Something that most kids just do. Maybe a tear or two, even a bit of minor manipulation. I know because I’ve been there with Harlan. But eventually your kid just walks into school right? Well not if they’re Malakai.

                He simply refuses to walk into school like the rest of the kids. He cries, screams, performs and is genuinely and desperately unhappy by walking into school. And together with his teachers we tried everything – nothing short of a welcoming party! The only thing that was missing was a marching band and streamers… And yet? Not having it.

                Last week after a particularly difficult drop off where Malakai even tried to bite me I stumbled back to my car after he’d been dragged off into school and I wept. Big hot tears streamed down my cheeks. I just couldn’t believe that after all we had been through with Malakai, after all his hard work and our immigration to another hemisphere, it could all fall down on walking into school. Seriously? It would be this that would undo us?

                Then it dawned on me – step back and take the pressure off. Think of another way – walk him to his desk myself. Give it a bash because really, it couldn’t get much worse… And it worked. He goes in happily now when I take him. Problem solved right? Yes! But this is what I mean about a yin and yang – not accepting and accepting. It’s a fine line and a funky dance…

                I realised today that there are just some ways that Malakai is different. He will never be the same as other kids. And nothing we do can change that. We need to accept that and meet him where he is.

                The challenge is deciding when to accept and when to push him to achieve more, do more and be more… that’s an aha moment for another day obviously.

A whole lot of newness

 

Happy New Year!!!

Ok. So I have never been the best at hitting at the nail on the head when it comes to New Year, I have always been a bit slower on the uptake and this year is no exception to that rule.

So, it's already February and I'm wondering where the time has gone? Wasn't it just Christmas? Good grief!

But I forgive myself (for once) because life has certainly been a crazy mish-mash of newness at every turn; immigrating to a new country, on a new continent, in a new hemisphere will do that to you!

Getting used to life in beautiful Surrey has been interesting, gut-wrenching, uplifting, terrifying and totally satisfying all at once. The tough bits are all about missing home, about looking out the window to face yet another day of drizzle, about craving an Ouma rusk with every fibre of my being, about wanting to reach out and realising the person I want to reach out to is not just down the road anymore. Yes, there have been tears.

But then I am faced with the glorious bits; driving through the countryside past farms and tiny villages to drop my children at their respective schools, really being dumbfounded at the prettiness that reveals itself around every corner, being pleasantly startled at how well the bureaucratic machine turns in this first world country, and of course... the children.

I am so stinking proud of my boys. Harlan has been a champion of a boy, walking into his new school and settling in with such bravery despite the fact that I know it was difficult for him. I know he was scared, I know he was nervous, I know he wished he didn't have to do it, but he did and he's happy now and I am one proud mama.

Malakai's school has been incredible, gently guiding and supporting him through the process of settling in. He has made incredible strides in understanding a whole new system and has gone from being allowed to run amok to sitting in his class alongside his classmates. This may sound small, but in Special Needs Parenting Land, this tiny step takes on Epic Proportions, trust me... I am so stupendously happy with this school that I actually find it difficult to put into words what they are doing for him... and in turn, for me.

So yes, I am a bit late for the New Year. But trust me, the New Year has been the last thing on my mind. Now that I'm all caught up and officially residing in 2014 in both body AND mind I am looking forward to everything it has to bring.

Photo credit: www.surreyhills.org

What I know for sure

  

When I was younger I thought I knew a lot of things for sure, and such is the natural and inevitable bravado and confidence of youth. Failure is almost never an option, or even a reality, as our lives are held up and supported by those who come before us - parents, grandparents, teachers and anyone else who has a vested interest in giving us the belief we need in ourselves to take on the big wide world with a fighting chance one day.

 

As I've grown older there are many things I am not so sure of anymore, and I've realised that some of the most difficult things to do as an adult are those which you are not guaranteed the outcome of. You just do it because you must, or because you think it might work, or because you are trying your best. The result you want is not promised, and sometimes your heart is broken. Plain and simple. Life happens, as they say.

So when we decided to immigrate our family from one hemisphere to another based on the belief that both our sons' deserved the opportunity to attend mainstream schools, that it was within our reach to drop our children off at the same school gate each morning, that Malakai belongs with his peers because he's a little boy just like any other little boy - or that he at least deserved the chance to mainstream... all these beliefs that we held onto (and that South Africa couldn't offer us) led the biggest decision we've made for our young family. A move that cost us our life savings, not to mention the priceless loss of leaving our family, our friends, and the home town we've known all our life. Even though we thought we knew what we were doing, we weren't exactly sure how this move would change our lives and if we would end up getting what we so wanted for Malakai and Harlan.

Until we did.

Because we sure did, and I now I know for sure. We made the right move. We did the right thing. Our choice gave us the result we so dreamed of, and even more.

To give you an idea - the letter below is from the Special Education Needs Coordinator (SENCO) at Malakai's new school. This letter followed our first visit to the school once we arrived, where we were shown around and had a meeting with the principle and SENCO.


Dear Loren,

I hope you and your family are settling in well and looking forward to Christmas in Surrey.

Since we were last in touch, we've been advertising for extra special needs assistant support with the view to Malakai having full time 1:1 support. Malakai will be in a Year 1 class with his peers but also have the support he will need to help him access the curriculum at his level and the flexibility to use resources from the Reception classrooms (if you remember how excited he was to try out the bike on the playground!). We feel he will also need some support in the first instance due to his toileting needs and to ensure his safety as he appeared a little flighty on his visit. The advert states that the support is for a Year 1 child with Down syndrome (but does not name Malakai) this is in order to attract people with either experience of working with Down syndrome or people who are willing to learn about working with a child with Malakai's needs. We hope to make an appointment in the first week back after Christmas and aim to start Malakai in the school week of the 13th of January.

The educational psychologist would prefer to see Malakai in our school environment and would like to come in during the first week. No date/time is fixed yet but I will let you know when it is. She will start to assess Malakai's needs and this will feed into the satutory  assessment process which Lauren has sent you a leaflet about. Initially Malakai's support will be paid for from our school funds and once he hopefully gets a Statement of Special Needs additional funding will become available from County.

If you are available then Malakai's class teacher (Mrs Kernot) would like to see you at school next Tuesday. This will be an opportunity for Malakai to look around again and take any photos you might like (Mrs Kernot is also hoping to take photos and put a book together for Malakai). During the visit, we hope Malakai will be able to interact with some of his new class friends and Mrs Kernot is planning some playbased activities. Mrs Kernot is looking forward to meeting you both.

I imagine you've learned so much about Down syndrome as Malakai has grown up and for most of our staff we are at the beginning of the journey. If you have any resources you feel are helpful please let us know. I've been in touch with the Down Syndrome Association who have a great website and give support to schools and families. We also have two special schools locally who have outreach teams who work with us mainstream schools to develop our knowledge on different special needs. There are also some training opportunities coming up in the spring term from the Down Syndrome Association which we hope to attend. The educational psychologist will also provide us with support tailored to meet Malakai's individual needs.

We are a dedicated staff and will do everything we can to ensure Malakai is happy and safe, in a stimulating learning environment.  We look forward to your visit. Many thanks and best wishes.


When I got this email I was left speechless - literally. I didn't know how to respond, what to say, where to even start. I was dumbfounded at the level of interest, care and attention they had given my son. MY son!

We did visit, and it was yet another example of their sincerest hopes to give Malakai the best. We were welcomed by Mrs Kernot (who's wonderful by the way!) and two little ones from Malakai's class. They gave us a school tour (again) and took photos all along the way. Malakai was totally smitten by everyone and wherever we went in the school the teachers and support staff seemed to know who Malakai was, greeting him with warm smiles.

As promised, Mrs Kernot did make a book for malakai and she and the SENCO actually dropped it off at our home and came in to say hi to Malakai and meet Harlan. Dropped it off!!! Seriously...

So, what I know for sure is that we did the right thing. We made a good choice and the promises are like big warm arms enfolding us and saying 'you did good, well done'.