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I have not written a blog for two weeks. And now here I am. I feel rather delighted with the quiet time I had and with all that I have achieved in these two weeks. One aspect that took up most of my time was my investment in my children’s back-to-school preparations. That required focused time and attention from me. It is such an important part of my year that even my Christmas preparations can’t compare. Why? Well, because I am a big believer in “how you start is how you finish”.

My hope is for my children to aim for the highest version of themselves with self-respect and self-love.

In the days leading up to the first day of the new school year, we (being Michael and I) encourage our children not only to start getting to bed a little earlier; we also coach them into thinking about what personal goals they want to set for themselves for the year ahead. Our back-to-school preparation includes providing our children with: a safe space to face their fears, plant their hopes and to acknowledge what supports they already have for the challenges that the year will bring.

One of those challenges for our family is when Savannah has a medical flare up. This happens at anytime during the year. Sometimes she is admitted to hospital and that means our family routines change drastically. Both Talisa and Eli know what it feels like to face an important exam or event while feeling worried about their sisters’ health. It would be neglectful of us to assume that the concerns we deal with regarding Savannah do not make an impression on Talisa and Eli. Anxiety is a real issue for teenagers and too often they are not taught helpful ways to deal with this. Anxiety in teens:What it looks like and strategies to help from Parent24 offers some insight into this topic.

In our home, Michael and I have a golden rule all year round but most especially during the month of January: we ensure that we are available to Talisa and Eli to listen to anything they have to say.  We believe that “how you start is how you finish” and we want them to start strong. What they are saying or not saying as they begin the daily school grind are markers that guide us on how best to support them.  We know that as teenagers our children need us to listen more and to lecture less. Sometimes that can be really hard to do as parents. An educational psychologist has been part of our parenting journey at different times and we value the process that we went on with them in helping us to help a specific child at a specific time.

Savannah being autistic meant that our then educational psychologist had her work cut out for her in teaching us neuro-typical parents a totally different way of thinking about parenting. We learnt how our emotions affected Savannah when we did not understand what she needed.  We learnt that we caused more anxiety if we indulged ourselves with unbridled expressions of emotions. It only exacerbated the issue at hand as Savannah’s anxiety increased and we became part of the problem when we should have been part of the solution. We learnt how to express ourselves in a way that became supportive to Savannah without any outbursts from her or us. You could say, having learnt to respect our child’s right to a space that is calm and patient, means that Savannah trained us well for her siblings. 🙂

Generally teenagers are usually more emotional yet less able to express that in a way that will be helpful to themselves. We want Talisa and Eli to feel free to express their fears and hopes without the worry about whether or not it will displease us. We want them to feel brave to go to every corner of their souls to seek out what might be possible for them and to be able to explore those ideas with us. Even if we do not understand it, it is more important for them to feel free to express themselves than for us to limit them to only our own understanding of them and to our dreams for them.

This time of planning, discussing and listening to each other before the school year consumes us is empowering for all of us. Our plan includes our goals, how to achieve that and what supports are available to each family member. I wrote about this last year in my post The Safe House. Each person writes down their personal goals, their academic or career goals, their spiritual goals and we agree on a goal or goals for us as a unit. We talk about what we have written and if necessary we discuss how the family routines or resources will be restructured to support relevant goals.  We also write down how we plan to achieve each goal and by when we want to accomplish each goal.

Having a child who is autistic and medically complex means that Michael and I cannot completely plan what she will need during the year. But sharing our goals together means that we are all continuously looking out for each other. Not only are Michael and I mindful of being available to the children and being realistic about what they need; the children too become more involved in how we function as a family. We found that as they naturally assume more responsibility for their sister than she will ever be able to do for them, they also naturally become a support system to each other and in some ways to us a well. This is not a bad thing for children.

We discuss different areas of our lives as we plan for back-to-school. Some areas require more detailed discussions and others may require a less detailed discussion. From having daily routines and acknowledging how each of our routines impact each other, to deciding who we will pursue relationships with and who we will cool off from (if anyone) are all part of these plans for the forthcoming year. We pray for the year ahead and for each other.

Talisa and Eli were all smiles on the first day of the new school year.

During the year Michael and I make a habit of checking in with each other and with the children about their plans. We also celebrate when the children achieve a goal (Michael and I are learning to do the same for ourselves too). At the end of each school year, we review this document. It is empowering to see how much each person achieved. If someone did not achieve a goal we discuss this together. We facilitate a discussion to help our children reflect on themselves for answers as to why they did not achieve a goal. This has been of greater significance for them that we do not accuse them. Ultimately, we want our children to take responsibility for the pursuit of their dreams. We want them to be brave enough to be self-aware of their own shortcomings. Mostly we want them to learn how to pick themselves up and to persevere instead of falling into self-criticism.

During all of this, the very personal goal I set for myself is to be a parent who helps her children to aim for the highest version of themselves with self-respect and self-love.

Next week, I will share more about how I helped my teens get into a positive mindset using an idea I learnt at Journey To You. 

Our family had a great treat on Saturday when Savannah was able to attend a wedding with us. After attending so many functions as a family of four; it was awesome to finally attend something as a family five. What fun it was to get dressed. A very dear friend loaned Savannah a beautiful Punjabi (a traditional middle eastern garment) to wear. She spent days looking at it and feeling it so that she could become used to the texture and colours.

Savannah struggles with sensory processing difficulties, amongst other struggles. For many, many years we could not wear traditional clothing because the colours were too overwhelming for her. So overwhelming in fact that she would throw up after terrible bouts of gagging. This past weekend Savannah, Talisa, my mum and I wore traditional Indian clothing and I had a special time getting the girl’s hair and make-up done.

We took many photographs and created lovely memories that was special to share with my Facebook contacts on my personal page. Everyone enjoyed seeing us decked out and acknowledged how special it was that we have a photograph of us as a family of five. As I study the photo of my family looking back at me, there is something that I want you to know about families like us.

We are grateful when Savannah is acknowledged.

No, we do not want to be the centre of attention nor do we want her to be treated any differently. But her disability means that there are some things that she will never be able to participate in for varying reasons. Please don’t go off on the “positive thinking” thing. Some people are born really short and need a step-ladder to reach the top cupboards in their own homes (I know, I am this person), and all the positivity in the world doesn’t make them grow to reach the cupboard. So yes, same thing. Savannah’s disability means she just can’t do certain things. When she is acknowledged with kindness and compassion just for who she is; it builds up her self-esteem and makes the hard stuff a little more bearable for Michael and I.

Earlier this year at one of the weddings that Savannah briefly attended, the bride and her mum had a family member bring a bouquet of flowers to Savannah to hold. The bouquet was a smaller version of the brides’ bouquet. Savannah held it while she watched the bride walk down the aisle. With so many things for a bride and her mum to think off on such a big day, it was very touching that they thought of including Savannah in this way. Note: the bride never posted a single picture of this on any social media platform. It was just a special moment for her and Savannah and was not the brides’ opportunity to be “applauded for doing something nice for the disabled kid”.

At another wedding that Savannah could not attend because she was unwell; instead of throwing her bouquet, the bride gave it to me for Savannah. Yet again, at a different wedding, the bride also gave me her bouquet for Savannah paying tribute to Savannah in a moving speech. Then all the guests stood in prayer for Savannah. I wept.

At the wedding that we attended this past Saturday, the guests joined the bridal couple on stage for photographs. We would not have been able to get Savannah up on the stage and were contented to not have a photograph with the couple. But the bridal couple came down to where Savannah was seated and took a photo with her. That was very meaningful to Savannah that the bridal couple acknowledged her.

All these ladies displayed an unselfishness that is not seen too often today. To think of Savannah in these thoughtful ways when they have every right to be selfish is simply breathtaking. I recognise that we are incredibly blessed to have so many people of calibre in our lives. But too many of my friends with children with special needs do not have this support and insight from their own families and their places of worship. Some people even say it’s unfair that the child with the disability “steals” the attention on the day.

Families of children with special needs recognise that we are the “eye sore” of an event and we definitely do not want to “steal” the attention. Believe you me, it is no fun having people stare at your child or make patronising comments to you when they’ve had a couple of drinks and are suddenly less awkward to be near your child.  Or having to withstand the lovely ladies in their finery who stare condescendingly at you and at your child. No, thank you.  We do not want to “steal” the attention at all.

In society today, people without a disability wax lyrical about how hard everyday life is for them. A life they choose to live, built by their own hands. So it is astonishing that as a society we are not nearly as compassionate or caring to those who cannot live at the same pace that society sets. There is little point in buying a sticker or dressing up in costume to support a fundraiser for special needs; if when you have the opportunity to acknowledge the family in your midst with a person with special needs, you don’t do it. It is a testament to our humanity when we show that we care. It reminds families that there are good people in the world. It makes them brave and helps them to make beautiful memories with their children. The consequences of these actions have a far deeper impact than wearing a sticker ever will.

People with special needs and their families did not choose to be in need of support and care but we are. Our children did not choose to be dependent on their families forever but they are.  We want to rejoice and celebrate in the happy events of our families and our friends. When we make what is sometimes a mammoth effort to show up and to keep our bleeding hearts in check to celebrate someone else’s happiness; please simply acknowledge it; quietly and gently. You may forget the moment soon after the event has passed but we will remember it forever.

#acknowledge

Just when I decided to start writing, it seems as if my world has tilted and requires all my strength including my reserves to get it back on even keel. Suddenly I can’t find time to write as every ounce of me is consumed with just making everyday life run smoothly.

Yet insistently and persistently a couple of ideas are impatiently marinating in my head. Each insisting it should be written first. But NO. Right now I have to bring myself to a point of order:

a. Find a domestic worker/helper as soon as possible. The back story here is that our helper left us suddenly and without warning. I can only deduce that she wasn’t prepared to continue working with someone whose health goes more down than up. That someone being Savannah. So after two weeks of doing as much as I can to keep this home running, I need help! Did I just admit that? Will the sky darken over me? Will a storm erupt around me? Oh wow…I feel the sunlight. The most important people in my life, my inspiration; my husband and children need me alert and engaged. And yes, maybe I can be Wonder Woman (trumpet blares) work full-time; keep house; be the physiotherapist; be the good AAC communication partner; be mom to my special needs, medically complex twenty-one year old; be mom to an almost, not quite fifteen year old; while nursing my son through the longest infection he has had to date. But will I be nice? Will I remember who needs what meds? Will I shout more and talk less? What will they remember about these days? Mmmmmm….got to find that helper.

b. Take better care of my hubby. He hardly sleeps. He wakes all through the night to tend to Savannah and more recently Eli. He arranges his schedule to get me to and from the airport when I travel or to drop or collect children when my mum can’t get them from school. He is my co-conspirator, my best friend and basically the reason why I still appear to be a fairly nice, well-adjusted person. Without him, I can morph into Maleficent combined with a little Captain Barbosa. My darling husband would dispute all of this and say all sorts of kind, beautiful things. And he would say he doesn’t need anything else but me looking after me which brings me to point of order c;

c. Take care of me. So fellow parents of children with complex needs, there is that darn age-old conundrum: Take care of yourselves while checking all the tick boxes on the “absolute must be done” list for our special needs lives to thrive.

As families where someone has special needs we know the stats on divorce, family dysfunction, burn-out etc. People are always too ready to point out those issues which are largely unhelpful to know about.

Here in good old South Africa, and I’m sure many other parts of the world too; we have absolutely no help from the government. We cannot depend on public services for aid with in-home care for a person with special needs.

Nor do we receive any aid for domestic services. Either we do it all ourselves or we work hard to pay people to help us (knowing full well we must be ready at any given moment to step in when they let us down) or we must simply pick our battles: I’ll be a great mother and a mediocre physio coach or a fair communication partner or I’ll just be a good enough cook today…but whatever I’ll be; I’ll be it honestly.

For now that means I’m honestly enjoying snuggling with my son; picking through his delightful, crazy questions. While Savannah listens to the same song for the hundredth time this evening and we both know she will survive without a physio session tonight. The ironing will get done another time and the Whatsapp messages will be answered tomorrow.

Right now, I’m helping someone really important:ME.

 

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