October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn.
Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal.
She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.”
Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:
No one is allowed to hit her,
No one is allowed to be rude to her (with details),
No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly
No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge.
Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed.
If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them?
This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations.
I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it.
Also here is my truth –
I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!
October is Mental Health Awareness Month. For support join the growing community at JoinPanda.
My husband Michael returned to the hospital this morning for another “small” procedure (he has long covid complications). I wish that I was not a frequent-hospital-patient’s-plus-one. Yet, when all is said and done, I’d rather it be me standing next to the bedside of my family, than anyone else. This procedure was meant to only be a day procedure. However, from experience, it was best to err on the side of caution, therefore Michael is staying overnight.
This time of year, from spring until January next year, is what I refer to as our Maverick. Maverick is the giant wave professional surfers chase off Pillar Point Harbour, Northern California. It is known to be one of the most dangerous and treacherous waves, and those who ride the Maverick are hailed as Titans. For me, this season from now until January is my race to be a Titan! This is a look inside what being a caregiver is like for me.
Why is this season more challenging?
Savannah is more anxious during this time. She experiences the change of the season into Spring in ways which makes her physically uncomfortable. To cope, Savannah self-injures. She has improved so much in this, but it is still a coping strategy that she defaults to. Savannah is not even aware that she hurts herself. It is not severe and nothing that Dettol and keeping the skin clean won’t heal, as well as strategies to redirect her and to increase her awareness of what she is doing. Still, just seeing her abrasions, and feeling like I am not doing enough, takes something out of me that is mentally and emotionally exhausting.
Three years ago, an occupational therapist worked with Savannah towards her overall wellness. We have maintained and seen an increase in her wellness since then. Savannah never slept through the night before that, and her longest length of sleeplessness was about three weeks straight. Since her time with the occupational therapist, Savannah only wakes up some nights. That is a huge blessing. However, during this Maverick season, she tends to call out more often while asleep.
Then there are the celebrations like Diwali, Guy Fawkes, and New Year’s Eve when sometimes there are fireworks. In the last few years, Savannah copes much better on these actual days but in the weeks and months prior, she is fixated on what sounds will be heard. She talks about it relentlessly.
Added to this year’s Maverick season, is the uncertainty with Michael’s health and the challenges we’ve had with our car. Savannah takes both issues very personally. She is looking forward to some events over the next weeks and months with friends and family but now that her brain is in anxiety mode mixed with excitement, she needs much more support to cope.
Roll back to this present moment, and Michael’s procedure.
Savannah is very sweet and wants to be near him to pray for him. When she hears Michael having an asthma-related issue, her anxiety deepens. Hence, this was partly the reason for him to stay in the hospital overnight to fully recover and maybe lessen Savannah’s worries.
This is our reality. It doesn’t phase me as much as it is exhausting for me. Still, I cope. I learnt to breathe deeply and get the next task or job done while redirecting Savannah or talking her through it. When I watch surfers barrel a Maverick, I feel like that is an analogy that resonates with how I feel. Like a surfer in a tube of a wave, trying with all her strength to keep her balance to ride out the Maverick without falling.
I also know that no one is coming to save me from this. People will help. They will offer advice, a meal, a shoulder but every morning it remains up to me to get up out of bed, face the day and be brave enough to go again down the rabbit holes of my daughters’ mind and my husband’s health.
How do I cope?
I acknowledge that this is a tough role to sustain. Instead of having a fixed plan to cope, I have several options that I can interject into my day without it feeling like another stretch for my mind and my heart. My activity of preference is walking. When I can’t make the time to do that, I listen to a favourite playlist or a podcast, talk with people who I enjoy being with, or I write. And I love trees. Seriously, love trees. I photograph trees wherever I am.
I also lean into my faith where I trust that God cares for me too. Sometimes I cast my worries on Him, other times I am loud or silently weeping to a friend. At times, I am questioning, and other times I dance joyfully. Always I am not holding these highs and lows hidden inside me. I have a fulfilling life outside of caring for my family too because I need to be in the spaces of my ministry and work to remain soft.
Often family caregivers tell me that it is easier said than done. To have any life outside of being a caregiver. This is true.
So, say it, and keep saying it. Over and over. Until your ears carry it to your heart and mind. Until someone else can hold you, listen to you and help you. Until you know you have your soft space inside of you.
You matter too. Your joy, your dreams, your experiences, your challenges..it all matters. To help make it easier for you to go from saying it to doing it, tell me in the comments one activity, routine, or indulgence that you miss doing, and how you think you can start at it again.
Information about Savannah is shared with her permission.
Like many people, I did not sign up to spend my days being a caregiver. I did not make allowances in my personal plans to be a caregiver. I did not even consider it when my daughter was diagnosed as a person with a disability. When my husband and I married, I said the words “in sickness and in health” believing that it was specifically for when we were in our old, old age.
Life takes us by surprise and when we love someone, be it a child, a spouse, a parent, a sibling, or a friend; we become what they need. I fell into the role of being a family caregiver. Respectfully, there are many people who make the choice to be the primary caregiver for their loved ones. Many people are fulfilled and find comfort in that.
I was not part of that group.
I was naïve when my daughter was diagnosed as autistic and having cerebral palsy. I thought if I learnt enough, worked hard enough, pre-empted conceivable and inconceivable issues enough, and did everything her education and therapy teams wanted me to do; Savannah would become a person who did not need as much support. Then I could pursue my personal goals.
That did not happen.
Although at twenty-six years old, Savannah has come a long way. She has levels of independence but not enough that she can be left alone for extended periods of time. She is unable to make important decisions by herself. She needs me more than I anticipated.
Still, I achieved some personal goals but often I had to lay my career, hobbies, and interests aside to help Savannah and care for her. Usually, that is not described as being a caregiver but simply mothering. And I loved that. All of it. Even more so when my younger two children were born, and they kept me busy. Mothering was my joy. My husband Michael was the primary breadwinner, and this rhythm suited us for a while.
Yet repeatedly like many families’ life happened. My husband was retrenched twice. At different times in our lives, one of the five of us, sometimes more than one, required medical care in a hospital and faced periods of recovery. We would have to repeatedly find the resolve to work out a new rhythm. After a time, even that became just how life was.
Most recently, my husband was diagnosed with long covid. He had the virus in 2020, and he just never recovered. This has made us feel more isolated than being a family to a person with a disability ever did. When a person has a disability, at least there is information or professionals to seek out for advice and help. With this diagnosis of long covid, we did not even have the vocabulary to explain what my husband was going through and its impact on myself and the children. With limited information available, it feels as if professionals are finding their way in the dark.
I feel the impact of Michael’s illness the most.
In our home with a person with a physical and cognitive disability, it took diligent organisation, physical stamina, and tons of patience to ensure that we helped Savannah to be supported as she needed without compromising the needs of the rest of the family. Our two busy teens, Talisa and Eli (thankfully Talisa is almost an adult), also need us in the same ways Savannah does, but they have the ability to be independent relative to their age and they can exercise self-direction and safety without us.
With Michael’s ongoing illness and complexities, I became his caregiver and his replacement for the children. I consider myself a caregiver to Savannah too because while I am still mothering her, to maintain some boundaries and to give her and myself autonomy, I find it easier to embrace the phrase “family caregiver”. I am still very much her mum, but when describing how we function “caregiver” works better.
Am I overwhelmed? You bet I am. BUT I am not overcome. I am not lost. I am not unsure of myself. I am not giving up all the parts of my life in which I find purpose and joy.
Why?
Because I knew how to pivot, and I knew what pillars I needed to have in place so that I could still carry myself and my family while continuing to engage in work that fulfils me and gives me joy outside of my family. I need both to be okay.
Join me at 8 pm this evening (06 September 2022) on the JoinPanda app where I will share how I learned to define that “balance” for myself. Simply download the app from Google Play (Android) or the App Store (ios), set up your profile and join my session. There are many other important topics being discussed too on a daily basis which are led by amazing people including mental health professionals. This is one app you won’t regret taking up space on your device.
The holidays are meant to be filled with joy, but they can also be stressful and challenging as many of us struggle with mental health. Looking after your wellbeing is more important than ever at Christmas time.
But, with uncertainty looming thanks to Covid numbers rising, the extra stress of navigating family dynamics and worries about loneliness for some, you might be in need of some serious survival tips to get through the festive season.
With this in mind, our Panda team have shared their invaluable tips on ways you can support your mental health this festive season.
Six ways to support your mental health this festive season
Christmas carols are playing on the radio, tinsel is winking at us from the shops, and most of us are feeling – well, a little flat.
The festive season can be challenging at the best of times, given the flurry of last-minute activities and the pressure to have a wonderful time. This is often exacerbated by feelings of loneliness, and a natural reaction to the loss many have experienced at a time when we are urged to value those around us. Throw in the climbing Covid-19 statistics, a new variant, and it’s easy to understand why the prevailing mood is one of depression, anxiety and angst, rather than festivity.
The good news? There’s plenty you can do to boost your mental and emotional wellness at this time.
Release the pressure
No, you don’t have to feel as if it’s the most wonderful time of the year. No, you don’t have to go to another party if you don’t want to or don’t feel safe to do so. No, you don’t have to deck the halls. We receive a lot of messages from the media around this time of year, telling us how we ‘should’ be feeling, and the outcome is that we may feel guilty, resentful and out of sorts if we don’t fit in with the image of the ‘perfect’ festive break. The solution? Ditch the sense of obligation, and lower your expectations. The reality is that for some people, this time of year isn’t magical at all – it can be really hard. If you fit into this category, give yourself permission to feel unhappy.
Take care of the basics
This is a message you would have heard many times over the past year, but that doesn’t make it any less valid: all the emotional ‘stuff’ is a lot easier to deal with if your physical wellbeing is taken care of. That means eating well (perhaps even giving up some of the indulgences of the season), getting enough sleep and exercising.
Don’t be afraid of disappointing others
The meaning of Christmas has become blurred behind a flurry of commercial messaging – which means that there is a heavy emphasis on extravagant gifting. That can place enormous pressure on those of us who are battling with the economic fallout from Covid – or who simply don’t want to buy into consumerism. What to do..? Stand your ground. Have a conversation with those who will share your celebrations and maybe set some ground rules: perhaps you can all agree to give presents to the children only, for example, or set a price limit on gifts. Accept that you may be able to please some of the people some of the time, but you can’t please all of the people all of the time….
By the same token, try to resist some of the social pressure that comes with this time of year. If you don’t feel like the drama of an intense family or friends ‘get-together’, explain that you’re happy to pop in for an hour or so, but cannot stay longer. See how it goes, don’t over commit.
Reach out to a professional
It’s ironic that although more people than ever are suffering from mental illnesses such as depression and anxiety, generally speaking, society still stigmatises these conditions – to the extent that many remain reluctant to seek assistance when they might desperately need it. The ‘Join Panda’ App provides a great solution in the form of a free-to-download app that makes it possible to access community support; check out information around mental wellness, and even get expert help, anonymously. The app, which is free of any charges in 2021, also has the functionality to track and monitor progress, using a gamified approach which makes the process far less daunting. Available via Apple store here https://apps.apple.com/za/app/join-panda/id1573239587 or Android here: https://play.google.com/store/apps/details?id=com.joinpanda.panda or search for ‘Join Panda’ in the app stores.
Gift yourself
It’s natural to think of others at this time of year, but concentrate on what will help you to remain calm and happy. Would it help to review and reset your boundaries? Do you need some time out – a quiet morning, a meditation, or a walk? Figure out what you need, and take the time to do it. A long chat with an old friend or a deep and meaningful one with a counsellor? Consider downloading the Panda app when you feel stressed, alone or just a bit sad- you will be able to talk to others who understand your feelings, or even a counsellor if you need.
Plan ahead
It’s not possible to avoid all the stressors that come with the festive season. There will be work tasks to complete before travelling, travel chaos and activities to attend. There will be lots of indulgences that might leave you feeling physically sluggish and lacking the vitality to tackle problems. There will probably be an odd argument with a family member (or two). Try to plan your days to give yourself enough time to recuperate and revive after all that socialising. This will give you a little space to make plans that will be less stressful, like time out to do your hobbies.
The Panda App makes mental health support more accessible
With so few South Africans receiving the help they need, there’s a potential solution to this challenge in the form of the Join Panda app – a free-to-download digital app that is designed to put mental health information, community support and expert help literally in the palm of your hand.
The Panda App is the brainchild of Allan Sweidan, a clinical psychologist who previously co-founded and headed up the Akeso Group of Psychiatric Hospitals, and Alon Lits, former General Manager and Director of Uber in Sub-Saharan Africa. The app makes it easy for anyone to invest time into their mental wellbeing by anonymously connecting to an array of valuable resources to assist them on their journey to improved mental health.
Users of the app have free access to the ‘Forest’, which allows them to engage with a community of other app users who may be facing similar challenges. The app also offers assessment tools to enable users to measure their mental well-being. A gamified tracking tool lets users document and monitors the progress they are making on their personal mental health journey.
Anonymity is key to so many health-support programmes, as many people are reluctant to publicly share their personal challenges, and this is core to the Panda app.
For many people across the country, mental health support is considered to be inaccessible or too expensive. While it’s estimated that a third of all people will at one time or another experience at least one mental health issue during their lifetime, many of these individuals don’t have the luxury of time, money, medical aid, or even transport to find a professional with whom to discuss their anxieties or feelings of depression. This makes the digital format for care a welcomed alternative solution.
For anyone who feels too afraid or stigmatised, or for whom mental health care and support are simply not available or affordable, the free-to-download digital Panda App has been designed to provide them with easy access to mental health information, community support and expert help. Available on app stores by searching “Join Panda” or the app stores or via
Are you okay?
I do not want this December to be like the last one.
I do not want to talk about vitamins, vaccines, and the virus.
I do not want to worry. Worry about the people I love, the people I know, everyone in my life.
I do not want to pretend to be happy, and I do not want to live in sad.
I do not want to make plans and have them turn to sand.
I do not want to dig any deeper to find joy.
I am not okay.
I have been here before.
I have had these feelings before. The reasons were different.
I know I have been here before.
I planned and packed for the holidays. In ways, my friends could not understand.
I unpack. I set the room. Her own duvet turns it into her own bedroom.
I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods.
I re-organised most of the furniture. The wheelchair must get through.
I arranged the activities in advance and prepared everyone.
I knew where the nearest hospital was, and I packed the medical reports. Just in case.
I cooked. I served. I entertained.
I did well.
I got to it all.
I think it will be okay.
I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me.
It will be okay.
I wake. I listen. She calls. I go. I calm fears I do not understand.
I go back to bed. I sleep.
I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him.
I feel the morning. I tip-toe out of the room. I set up for the day ahead.
I see them, my younger children, racing on the shoreline. My heart swells because they are mine.
I smile. I wave. They enjoy the beach.
I sit here. I hold her hand. The sand and the wind: too much for her.
I'll go to the shore tomorrow.
I'll go and dip my toes.
It will be quick. I’ll be back. They will need me again.
See,
I've felt this before. I felt all this, and I felt nothing, all in one go. But then
I learnt that all and nothing can work themselves out, when
I dared to stop and ask them, what are they all about?
I heard them say: we are trying to let you know it’s okay to not be okay.
I asked in a shaky voice: what is the way to being, “not okay”, as you say?
I heard them soothingly whisper: Come into the day quietly and softly before they all awake.
We will teach you what it means to not be okay.
I woke without the alarm. I started to write.
I wrote to God. I wrote to my heart. I wrote for all the ones like me.
I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think.
I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me.
I'm okay not being okay.Are you? - Desirae Pillay 2021
Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
Last month my post Dream a new dream was about the challenges parents of children with disabilities face when it comes to their own mental health. On my radar was a new application to investigate: JoinPanda which aims to give everyone access to mental health support. I was very intrigued.
JoinPanda is a uniquely designed app where everyone who has access to the internet can join the specific live interactive sessions for free which are led by experts or peers on specific topics impacting mental health today. There is so much more too.
I like their bold mission: Everyone should have access to mental health support and resources that enable lives worth living.
The Corona Virus Pandemic accelerated the use of online platforms for social closeness. Many people who were against digital platforms found that it was the only way to connect with family, friends, colleagues, for their educational and recreational needs. More pages on social networks have been opened for support and closeness. We are now finding that our sense of belonging exists in the online groups we join. Our communities.
Bu these online communities don’t always enable a life worth living. We have more people struggling with mental health issues because of these social networks.
JoinPanda is not a social network.
It aims to “be the go-to community and marketplace for mental health care and content”.
That is why I am excited about JoinPanda’s free Live Interactive Sessions (beautifully named “In the forest”, which I love), the Assessments and the Track your progress features. In my own time and in privacy, I can join sessions and engage in assessments and activities that easily give me the tools to care for myself. For further help and as a paid-for service, the Life Skills Training, and text-based Chat Support are also services that are available.
What JoinPanda means to me?
I survived childhood trauma, abuse, being a teenage mother, depression, divorce, parenting a child with multiple disabilities, and often I held on by the barest of threads. I could not afford counselling and support groups were few and far between. I could not identify that my mental health was a priority nor how to care for myself. It took a long road of heartache, pain, resilience, and courage to get to this point in life. It was a journey that taught me the value of support and a gift that I try to give to other people facing those same challenges. I am excited that JoinPanda is here and accessible to everyone so that care is only a touch away.
I will be hosting a session on Thursday, 11 November 2021from21:00 to 22:00 on “Support and networking for parents who are long term caregivers to their teen/adult with special needs”. Please come along and let’s learn from each other.
You can JoinPanda too
To join simply download the app here for your IOS or Android device. Sign up using the Promo Code ambp4panda, find the session title you are interested in and join. It is that simple and it is for everyone.
Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
The Christmas season is rolling around again and in less than a few weeks schools will close for the summer holidays, families will be finalising travel plans or everyone will finally agree that turkey does not have to be on the menu.
Many families are looking forward to the festivities, and yet there is a marginalised group who love and hate this season. For parents of children with challenges, this time of year can be a stark reminder that they are parenting from the trenches.
When the holiday season is not full of cheer, we learn to parent from the trenches
This is me working as a motivational speaker. I was the keynote speaker for this event. I returned home and helped Savannah to bathe, and then took her to spend time with her friend. Learning to balance is key for so many parents like me.
When Savannah was in school, this time of year was incredibly difficult for me. The end of the school year was also the end of the routines that sometimes held families like mine in careful balance. Many children with special needs, do not always enjoy the holiday hustle and bustle. This makes for a time of year that is challenging for families.
Parents have to go it alone when caregivers go on leave or when support from family and friends becomes scarce. For families like us, we do not simply “go on holiday or join the big family lunch”. What is fun for the rest of society can be stressful for the family with a child with special needs.
During the intense years of my mothering journey, I juggled being Savannah’s caregiver (she is twenty-seven years old now) while also raising two neurotypical children Talisa (now twenty-one) and Eli (now sixteen) without consistent help, and during some of the most emotionally and mentally painful times of my life. I learned a great deal about resilience and grace. Today as somewhat of a professional parent, I know what it takes to parent from the trenches. Especially during the Christmas season.
These are some tips that worked for my family:
1.) Prepare everyone in your family for the changes in routines. Talk together about what those changes mean for each of you. Start speaking about it now and include your child with challenges in the conversation. Use age-appropriate language to explain what events will be coming up or what he/she can expect in the next week or so. Regularly talk about the plans.
To support your conversations you can use visual schedules and social stories to give a graphic meaning to what you are saying. This is especially helpful for children who have little or no functional speech or who are non-speaking.
2.) Plan for the holiday season even if you are going to be home. If you do not have a day-by-day plan, aim to have a general plan for who you will be seeing and who will be involved from your home. Many people become overwhelmed by feeling pressured by other people’s holiday agendas. If you have your plan set out first, you will already know what is realistic for your family to be part of.
3.) Do not commit to catering or providing a meal unless you are absolutely sure you can. If you know you won’t have time, rather ask the host if you can contribute financially or offer to buy something.
If you know that your child will cope better in their own home, then offer to host a party at your place. This works especially when you are the mum whose child needs a full-time carer, and you still enjoy throwing parties. Take note of who you invite though. I find that the best guests are the ones who help out and who don’t stand on ceremony. They are usually the kind of people who will also care for Savannah during the evening.
4.) If you are hosting a party, make sure your child knows who is coming. It is also acceptable if your child does not want to join the festivities. If it is not their sprinkle of magic, it is not their sprinkle of magic. It is also perfectly fine to decline invitations when you feel it will upset your own emotional or mental balance.
You have to parent in ways most other parents won’t understand. Saying no is a “Superpower” you want to have.
Desirae Pillay
5.) Please ask for HELP. Do not try to do it all. Shopping, cooking, and keeping everyone happy and entertained, can be overwhelming for many families and no one expects you to do it all and still be the life of the party.
I had to learn how to ask for help because somehow I believed that I had to do everything on my own. I think it was partly due to my gender and my culture and being a parent to a child with special needs. I felt bad about asking for more support. But I had to learn to ask for help because “mommy-ing” was hard even with my husband and my mother’s support.
These next tips are to help family and friends who want to be helpful to a family with a child with a disability:
6.) Please consider gifting a frozen meal. Many families do not always sit down to a warm, hearty meal when they are in the throes of meltdowns or tending to a sick child. A meal that can be heated on the days when they are just too tired to make dinner is honestly one of the best gifts to give a family who are caregivers all day and all night. Some families are on special diets, but what a treat and act of LOVE if you did take the time to provide the food they can eat.
7.) Finally, when a person uses a wheelchair, it is more challenging to get around busy spaces. It is helpful when people are considerate of that. If your invite is declined on those grounds, it only means that being able to move independently and sit comfortably for someone in a wheelchair is a big deal. A family like mine would rather not attend because we know we won’t enjoy the time if our child is uncomfortable. It does not make anyone a bad friend. It just means we can look at ways together to socialise where everyone is comfortable.
The greatest gift of all is – To Not Be Judged
If we seem tired or frustrated at times because of the high-demand lifestyle we live, please do not judge us. All day and every day, we are living between your world and our child’s world; constantly explaining your world to them, and their world to you. Yet we as carers fit in neither group. Still, we do it anyway because we love our children just as much as you love yours. Being able to care for them and celebrate with them is a gift many parents like me do not take for granted. We will do anything to keep it that way for as long as we can.
This Christmas please consider families like mine in your community and be to them what you would have them be to you if it was your child who needed what our children need: Faith, Hope, and Love.
Desirae has three children: Savannah (27 years), Talisa (21years) and Eli Michael (16 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
This post is dedicated to parents who put aside their dreams, have taken the knocks and wake up every day to pour faith, hope and love into the world. I see you.
The first three awareness topics are a big part of the fabric of my life.
The dream I hoped would become my reality
When Savannah was seven years old (she was already diagnosed with cerebral palsy but was not yet diagnosed as autistic), I was hailed as somewhat of a “SuperHero” mum. I learnt how to help Savannah to communicate. As a toddler, she could make three sounds which we understood to have specific meanings. She also used some signs and gestures to communicate specific needs. Now mind you this was all-pre-social media and with no access to the internet, so everything learnt was from therapists and good old fashioned intuition.
From there we used special software to teach Savannah to use pictures to communicate. Then she began saying some words, then some phrases and now prefers to communicate mostly by speaking. She is still not always easily understood and uses various methods to make herself understood.
Because of this feat in teaching Savannah to communicate, I had a career in that sector. I loved learning and teaching and training people who needed to use AAC, their families, schools, and other professionals.
Like many mothers before me and no doubt even now, I learnt on the job so to speak, and concurrently immersed myself in helping others. I knew what helplessness felt like, and I loved that eventually, I was able to help my child. How could I possibly not help anyone else’
Letting go of the dream
One day I was sitting in a training about a communication strategy, and everyone in the room was so enamoured with the technique. I was too, except I felt equally ill watching the videos. In all the videos, the person who everything depended on to implement was usually the primary caregiver and most times that was the mother. For years, I was everything to Savannah while also filling all the other roles I had. The best description was:
“I feel thin, sort of stretched, like butter scraped over too much bread”
J.R.R Tolkien – The Fellowship of the Rings.
The question I was trying to avoid went off like alarm sirens in my head: When will they (anyone who was bold enough to think they should speak on this point) stop telling us as mothers and fathers that we need to care for ourselves while we do the Superhuman task of staying employed while being available as a nurse, teacher, therapist, parent, cheerleader, cook, bather, cleaner, and friend to our child? While the scope of the needs within each of these titles kept changing.
I also knew without a doubt that being a “Super” anything meant very little when one can’t meet all the needs that a person with a disability has. Those needs don’t diminish over time. They became bigger needs like suitable housing, a suitable vehicle, access to services for adults, long drives to specialists, the ability to keep doing the same thing over and over for years and the strength to keep fighting for access and inclusion.
The skills I acquired in a specialist field, became a source of pain because the fact is that only a degree would have made a real difference to me. It did not matter how much experience I had or what force of passion drove my acquisition of that skill. Earning that degree would come at a huge cost in many ways, and with so little of myself left to spread, I had to let that dream go.
I felt I had let Savannah down. I gave myself to something that was not going to help me care for her well enough for the long run. I felt stupid for not pursuing a career in a sector with more options to increase my earning potential. I failed my family. I stopped trusting myself.
Dreaming a new dream
There is a line in a song:
“The very thing I love is killing me and I can’t conquer it”.
Monster under my bed song by Eminen and Rihanna
I used to sing that all the time because I loved my daughter. I loved what I did for a living. But I also knew it was never going to be sustainable to keep going in a field where the academic qualification mattered. Now I am here, forty-three years old, with a wealth of knowledge and experience that I can’t be credited for.
So I dreamed a new dream. I am incredibly blessed to have a paid job. It has little to do with my dream job so, in my own time, I still serve other families and professionals when I have the capacity to do so. I don’t know everything, but I know some things that make a valuable difference to others. My life has more flexibility and allows me to take better care of my family.
Have I found my dream life?
Yes and No. In the Book of Philippians Paul writes, “I know how to be content whatever the circumstances”. There are parts of my life now that I jump out of bed for and there are parts that I have to drag myself to do because it is the only option before me. I know the value of grit and grace.
In this country, access to support, skills, and empowering parents to be the best they can be to their children and to do that in a way that gives dignity to both the parents and the child is few and far between.
When it does exist, it is usually because a parent is making it happen for themselves and others. Far too often something has got to give. Usually, it is the parent’s mental health. Usually, no one notices until it is too late, and a life-changing event happens. A chronic or terminal illness, addiction, divorce, depression, or even worse abuse and even suicide. I have seen so many families fall apart, and I know that it has only by grace I have not yet fallen too far down the rabbit hole.
This October we have many issues on the calendar to be aware of. Mental Health is always a top priority for me. When we don’t have easy and low-cost access to support for parents and especially for those of us who have to be long-term caregivers, it is a feat to build and maintain the life we want. It all begins and ends with how realistic we are of how much a person can cope with, acknowledging that not everyone has the same capacity and that we should not be penalised for that. I sincerely hope that this post will in the least inspire you to:
Make spaces for parents who are trying desperately to find some meaning in their child’s diagnosis and are doing that by giving of themselves. Provide opportunity and friendship. Both are needed in equal amounts.
Remind yourself of when your child was a baby, and how hard those early days were. Now imagine doing that for the rest of your life while pursuing a career. That is long term caregiving. Give those caregivers a little grace.
When a parent changes course and tries something new at thirty years old, forty years old, fifty even sixty, it doesn’t mean they have failed. It only shows that they are willing to keep trying to add value to their lives, their family and maybe in some way even to the world. Be supportive.
Lastly, there is no such thing as fair in life. So when a parent doing double duty needs extra leave or gets that promotion, it’s not unfair. It is life, and sadly if life was fair, there would be more help for parents who are long-term caregivers.
Please be kind. It costs nothing.
Finally, to the mama bears who I have the privilege of being a pillar to, Khalil Gibran said
“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”
I am holding space for you as other women have held for me. You are not alone. In your own way, by your own standards, you can begin again and dream a new dream. It may surprise you and be a little more delightful than the ones you dreamed of before.
For Professional Help, please call
Lifeline: 0861 322 322
South African Depression and Anxiety Group: 0800 567 567
or contact a counselling service in your area.
Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
Last month we felled ten trees on our property. It broke my heart to do it. These trees were tall and beautiful and were one of the main reasons we bought our house. They were always there, from the day we first saw the house, providing shade and serving as a barrier of sorts between our neighbours and us. I could not imagine our garden without them.
As beautiful and comforting as these giants were, they also had long wide roots and were lifting the pavement in parts of the garden. Two of the larger trees were eroding each other’s trunks. If a strong wind came our way, both trees were in danger of snapping off and causing serious damage to our home. Some trees had been planted close to the boundary wall and now their sturdy trunks were leaning perilously on the walls. While these reasons justified cutting the trees, it was still a difficult decision as many birds lived in those trees. I was so sad that we were destroying their habitat. I enjoyed hearing the birds every morning when I woke up.
All in all, no matter how much I loved the trees, they had to
go. It was heartbreaking to watch the felling. First, the tree fellers cut the
branches and then the trunks. As the trees fell, they revealed the spaces they
had once occupied. It exposed areas of the property we had not seen this way
before, and I was not happy with the vacant spaces.
Sometimes we have to make brave choices to protect ourselves and those we love. My recent tree felling experience reminded me that this was similar to how we must deal with some relationships.
For the first week after the trees were gone, I felt unsure about whether we made the right choice in felling the trees. Over the next few weeks, I noticed a bird we had never seen before. After some research, I learnt that it was a type of Starling. Soon I noticed there were more birds of different species. For years I saw one lone Hoopoe visit our garden, and now I see about four or five Hoopoes at a time. There are also new birds with red feathers and some with yellow feathers. The garden still abounds in melody every morning. The most beautiful change is that when it rains, the rain reaches the plants that were shielded by the trees which are now flourishing and growing much faster than before.
Our lives are sometimes like a garden. We have relationships
like those trees that have become part of our lives yet we can’t recall
choosing them. For those of us who survived trauma; holding onto familiar
relationships is sometimes a coping mechanism. Often we hold onto relationships
out of fear of being abandoned, or because we need the validation or
familiarity. We sometimes do not see until it is too late that like those
trees, the roots of those relationships erode our lives. We may find it
impossible to accept that what and who remained after those frightful times,
were just that – what and who remained! They may not have been what and who we
needed to heal, to grow and to become who we were meant to be.
Trees are the earth’s endless effort to speak to the listening heaven.
Choosing to change those relationships, or remove them
altogether is painful. Uprooting or felling is messy, and it hurts. Yet, we are
not stagnant creatures. Like trees, we were created to become more, not just
for ourselves but also for all those who come into our sphere. As a created
being, we learn, we change, we become who God intends us to be. If the
relationships we keep inhibit us or becomes a barrier or blocks us from
receiving everything we need to thrive, then we live stunted lives. We might
yet bloom but we will always bloom in the shade of another. We might be
described as healthy and thriving, but like my little plants that grew below
the trees, we never reach our full potential.
It would be helpful if those trees, sometimes moved over a little to allow the sun to shine directly or the rain to splash on the ground below for the little plants. It would help too if the people who we were left with after a traumatic event learnt how to bend a little or step aside instead of becoming a barrier that needs to be differentiated by a boundary or be removed completely. If you need to do some felling, this is for you:
May you be courageous in acknowledging the role of the trees in your garden.
May you know the difference in relationships that serve as a gate and those that serve as a barrier in the garden that is your life.
May you know that letting go of relationships that have become a barrier does not make you a bad person, it makes you………..well YOU.
May you know that true love steps aside and trusts that the same elements that caused its growth, will nourish you too.
Heaven is listening out for your voice.
Trees are the earth’s endless effort to speak to the listening heaven.
I am asking this question for myself and on behalf of other parents to children with a disability: Are all children a blessing or are only children with a disability a blessing? Often when people learn that I have a child with a disability they reply with “she must be a blessing”. Well, all children are a blessing.
And, they contradict the above and confuse me when expecting a baby either by pregnancy or adoption and say: “as long as the baby is healthy and please God has no challenges”. Doesn’t everyone want a blessing?
For years I have had to bear up against ignorance, unkindness and the veiled arrogance that accompanies a belief that another parent must be better than me because their lives are not touched by disability. Too often people repeat socially acceptable phrases about their wish for an unborn baby without thinking about who is listening to them. They babble themselves into a verbal quandary and then when they realise a parent like myself is part of their audience, we are stuck with having to process the funk created between us.
Such funk moments can be made up of and are not limited to the following:
1. “Thank God (my baby/her baby/their baby) doesn’t have any problems.” – Please if you must say this, do not say it in the presence of a parent whose child actually is a person with a disability. Parenting children brings different challenges. Believe me, I know. From parenting a child with a disability to parenting two non-disabled children, there are days I’m more thankful for the challenges I face with Savannah. Talisa and Eli have no issue with me saying that, because equally I can be heard expressing that sentiment when Savannah tries my patience. That’s the reality of being a parent.
It is challenging in the best of families. After having worked with families whose children acquired a disability later in life due to a medical condition or accident, I witnessed first hand how remarkable and unfathomable the love of a parent can be. How in the face of tragedy, a parent can cling to blind hope for years. So maybe when faced with sharing news of a new baby, we can try to say “Please God grant the parents strength and wisdom as they learn to love unconditionally”.
2. “You are amazing. A SuperMum.” – Please don’t dwindle my sacrifices, moments of heartache, frustration, resolution and tears in our fight for Savannah’s right to equality to “Super” anything status. When in truth we are not welcomed into society as Superheroes usually are. SuperMum, I am not. Just Savannah’s mum; doing and being what she needs so she can live a life with dignity and respect. It comes with a ridiculous load of heartache and loneliness. Not perks of a Superhero. I know by walking with Savannah through this life, trusting God’s love for her and for myself, that we both have discovered an extraordinary universe of faith, hope and love still unbeknown to many Superheroes.
3. “Oh wow autistic! Your child must be a genius.” – Why yes, if your definition of genius is being able to remember what every member of her family wore to church every Sunday for the last few years, then Yes! But said child may also be unable to work out how to dress appropriately for different weather conditions. For example, said child can wear shorts and T-back when the weather is below five degrees celsius.
People have different abilities and a parents’ love is not measured by what level of ‘genius’ their children may or may not possess. Frequently I have to debunk that genius definition of autism with: “No, she is not like Temple Grandin or the guy from Rainman. She is amazing in her own unique way, just not like those people.”
4. “You make it look so easy. But I couldn’t be like you”. – No, you can’t be like me. You can only be like you. You can only be the parent your child needs, not who my child needs. Statements like this, while intended to be flattering actually have the opposite effect. They convey the idea that there is a limitation on a parents’ capacity to love and those who exceed that capacity belong in a special group. It just adds to making a parent of a child with additional needs, feel more alienated and increases the likelihood of depression and loneliness. So please for all our sakes, parents and expectant parents, lets just go from the premise that parenting is the most profound role anyone can ever have, without making it about standards or comparisons.
Savannah , Talisa and Eli Michael
My daughter, Savannah is a woman with a disability and can be frequently heard praying for other people and never for herself; because she sees herself as “Whole and Happy”. Talisa is an almost adult dreaming of her future where “Whole and Happy” will not be precluded by having a child with a disability. Their experience as sisters and as women who appreciate their own individuality without being made to feel that one is more of a blessing than the other, is rich and deep. So much so that when Talisa starts planning her motherhood journey, it will not be overshadowed by the notion of what she can’t be to someone she has yet to meet.
In my different areas of work and service, I get to speak to women from different ages and walks of life who are struggling with their own womanhood, motherhood and identity. Their stories matter and take up a great deal of my heart. But it is my own daughters who already have a residency there.
So I wrote this for my daughters, for when the world tries to rob them of their joy as women who understand a little something about ‘extraordinary’. I wrote this for women whose lives touch mine. For the expectant mother somewhere who needs to know this. And for the mum who is considering leaving her baby somewhere, anywhere because someone or something gave her the idea, that she is not capable.
I wrote this for the child who cannot fend for themselves and who may never be able to do so or may need much help because of having a disability. I wrote this because tonight they will be left in a hospital or a park or in a drain, unwanted by their parents but equally unwanted by the same society that will demonise the parents for giving them up. My own lived experience teaches me that too few people support parents with children with disabilities and even fewer will ever be heard confessing to welcoming such a blessing into their home.
A baby who is differently-abled, will need their family and their community to show up for them in remarkable ways. A child who is going to need extra help, extra support, extra anything, can also be the catalyst for ‘extraordinary’. The ‘extraordinary’ that changes our definition of success from counting accomplishments to being unable to count the depth of love a parents heart can hold while it tethers between heartbreak and joy over and over again.
This is the closest example of how much God loves me and what grace is available to me: That I am able and willing to love sacrificially and unconditionally.
This is also why I believe a blessing awaits anyone who welcomes a child. No further description of the child is needed. Selah
I have three children: Savannah (23 years), Talisa (17years) and Eli Michael (12 years). Savannah was born when I was eighteen years old. I was a single mother before marrying Michael. Savannah is autistic and is a person with cerebral palsy. She cannot live independently and I am her primary caregiver. I worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and am now employed in the child safety sector. I work for a non – profit organization that is a place of safety for babies who ultimately are adopted. I am also affiliated with another non – profit organisation supporting pregnant women in crisis. I have the rare insight of holding a space where these three groups meet – disability, unwanted babies and pregnant mothers. In facing my own parenting struggles and through my faith journey, I learnt a great deal about what people say they believe and what they actually believe. And so I write for the purpose of sharing different perspectives. I write to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. I write because I know what hopeless felt like when I believed the wrong words. I write because I know that Faith, Hope and Love abide.
