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#inspirationalwriting #love lives here #faithhopelove #familyfirst #cerebralpalsy #autistic #caregivermom #challenges #disability #specialneedsparents #whenlifehurts #choosejoy #love #respect #dignity

Browsing

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.

Image is a black and white panda. The word panda is written in bold whit font below. The background is blue.

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”.

Image is a table with three columns. The first colums lists the features of Panda, the second column lists the corresponding description, and the last colums list what features are free or paid for.

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 2021 from 21:00 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.

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.

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