COMMUNITY BLOG

8 Things siblings of children with special needs struggle with

Having a sibling with special needs is a reality many children are born into, including my three typically developing children.  Of all the things my children experience that I never did, their experience of growing up with a sister with significant disabilities is something I struggle to understand, even as I watch it unfold daily.

The advantages to having a brother or sister with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these typically developing siblings also shoulder tremendous burdens that are not often or easily discussed.

Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. Feichter discovered that there is a lack of information regarding the full experience of having a sibling with special needs when she searched for information to help her older daughter. She wanted to better understand the needs of her typically developing daughter, as well as help her daughter connect with other siblings with the same struggles, so Feichter began interviewing siblings of individuals with special needs for her in-progress documentary, which has the working title “Not Typical.”

While every sibling — and every family — is different, Feichter found some common experiences, many of which my children are having.

Feeling like they need to be perfect. Siblings of individuals with special needs know how hard their parents work to ensure all of their sibling’s needs are met, and often see their parents struggle to meet these needs. Many feel like they can’t make mistakes because that would add to their parents’ burden, so they believe they must be perfect at all times. This is an impossible standard to meet, and can lead to stress and feelings of inadequacy. One girl said she felt like she “had to be Ms. Perfect and not have any problems for [her] parents to deal with.” Another said that she felt as though she could never be “enough.”

Feeling like they can’t express their feelings. Most typically developing children love their sibling with special needs. Yet they may also resent how much of their parents’ time is taken up by caring for their sibling or feel embarrassed about their sibling’s behavior. One girl said she “was never allowed to mourn openly or to be mad or sad about [her] brother” and another said her friends thought she was being mean if she said anything bad about her sister, even though friends with typically developing siblings often complain.

Having a different idea of family and home. For most children the concept of family is based in togetherness. But when a sibling has special needs, family quality time may look different. One girl recalled that her mother was “assigned” to her sister with special needs and her father was “assigned” to her. The family often spent time apart, especially when it involved leaving the house. In many families, the sibling with special needs may not be able to attend certain events or go certain places for a variety of reasons, including therapy and medical appointments, physical barriers to access, or sensory issues. In some cases, the presence of caregivers and therapists may redefine what a family home is for children. In my home, for example, our child with special needs is normally fed by a personal care attendant. A therapist is often present at our family meals as well. Nonfamily members are typically also present even during lazy weekends at home. Some siblings said that places outside the home, such as school or a relative’s house, are more of a refuge for them than their home.

Feeling as though their problems are minimized. Sometimes a sibling with special needs has complex and even life-threatening problems. An issue faced by a typically developing sibling, whether it is a problem with a friend or an academic struggle, may seem small compared to having limited mobility, learning difficulties or sensory issues that require intensive care or prevent a child from attending the neighborhood school. One girl said her parents rarely dealt with her problems, instead telling her to be “strong.”  Another felt her parents never took her problems seriously because they considered her the “lucky one” for not having a disability.

Feeling isolated. Typically developing siblings may be lonely because they don’t have peers who have siblings with special needs. So they feel different when their friends ask “what’s wrong with your sister?” Some children also feel self-conscious about their sibling with special needs, and aren’t sure when or how to tell their friends about him. Others feel uncomfortable inviting friends over because they are unsure of how their friend or sibling will react.

Dealing with intolerance early and often. Children learn early that there is not universal acceptance for individuals with special needs, and that their sibling is not welcome everywhere that typically developing children are. This can be deeply disappointing to typically developing children who want to have shared experiences with their sibling. They regularly encounter individuals who refuse to move from seats designated for individuals with disabilities, and those who make unkind comments about other accommodations their sister needs. These early lessons in intolerance, and even hate, can affect their world view and make them cynical or resentful of the limitations placed on their sibling and themselves as a result.

Feeling like they are asked to help too much. Some typically developing children are expected to help care for their sibling with special needs from a young age, even if that sibling is older. One girl said that she felt like the “attention police” at home since her mother was constantly telling her that she had to pay attention to her sibling with special needs. Others are expected to push wheelchairs, participate in therapy sessions, or attend to their sibling’s personal care needs by feeding them or helping to get them dressed. Many are told early on that they will be expected to care for their sibling when their parents are no longer able to do so. This puts enormous pressure on them.

Feeling like they must grow up quickly. Because of the sum of their experiences, from feeling as though they are on their own to handle their problems to feeling pressure to be perfect to being given responsibility for their brother or sister, some siblings of children with special needs feel as though they are forced to grow up too quickly.

Most typically developing children love their siblings with special needs beyond measure and are close to them. But to better understand and support them, it’s important to acknowledge their struggles. There is a need for more information about the experience of growing up with a sibling with special needs. While there are a few places the stories of these siblings are told, such as the fictional book “Wonder” by R.J. Palacio, hearing from the siblings themselves in “Not Typical” will help many feel less alone and better understood.

Jamie Davis Smith is a Washington-based mother of four.  She can be reached at jdavissmith03@gmail.com. Follow her on Facebook and Twitter @jamiedavissmith.

 

The Struggle to be a Good Parent

Written by Johanni Meiring

Most of us, the parents, confront the thoughts about good parenting, day-after-day. Have I done enough? Am I making good decisions? Could I have done more?

All the emotions caught up in parenting has been found to be a mush of so many elements including personality types, past hurts, childhood experiences, circumstances, parenting styles, lifestyles …

What always astounds me, is the perspective that time brings to the picture.  When we start our parenting journey we are always seriously on top of our game! Yes, we start off vowing NOT to make our parent’s, or the other parents’ mistakes. We have a certainty to take this challenge, and correct all the wrongs we have suffered, by being extraordinary parents to our children. 

Almost always, these expectations blow up in our faces …

Yes, even those parents that might seem to have the most perfect children and lives, suffer the same fate. It is an utterly uncomfortable experience!

As our children grow up, instead of executing a well-thought-out plan, we are left to navigate the waters of children acting and reacting totally opposite to how we expected they will act. To understand them we must adapt to completely new generational viewpoints. Parents also deal with the whiplash effect of our own most annoying DNA parts being passed onto these little humans, while they hold our hearts in their hands.

BUT, as time move on and our characters build, we realize that this is how it’s supposed to be.

PARENTING: It is hard and unsure. It leaves you totally vulnerable and frustrated, but stays the most rewarding experience in your life.

Why? Because it was never supposed to be about our plans, our specific expectations and all the star charts we felt we must complete for ourselves during this challenge.

The whole purpose of this life changing journey called parenting; is to learn what it means to not just live for ourselves. To help us to understand God’s love for us. The love no parent can put into words.

That is it.

That is what parenting is about. You are not going to be the one who comes last in the “good parenting race”. You will reap what you sowed in love into your children’s lives, but the perfect parent award none of us win, because there is no such thing.

The writers of Education Matters gave these very insightful thoughts:

“Comparing, judging, feeling fear and guilt is totally unhelpful and unproductive. All the rushing around for our kids in a fiercely competitive culture is driving everyone crazy (kids and parents). Children from affluent families are 2-3 times more likely to suffer from depression, anxiety and stress than children in poverty.

There needs to be more time and space to just be.

Perfection at work and at home is unachievable.”

(www.educationmatters.co.uk, 4 Jan 2019, What does it mean to be a ‘good enough parent’?)

Let’s stop wasting time on the unachievable and revel in the peace of being who we are for our children, leaving perfection behind.

Written by Johanni Meiring

Thank you for reading! It’s a pleasure having you here!

Please spread the love by sharing this blog.

If you would like to find out more about Life an Parent Coaching with Johanni click HERE

 

The Power of Vulnerability

Watch a talk by Dr. Brené Brown about the power of vulnerability. Brown is a researcher professor at the University of Houston, Graduate College of Social Work, where she has spent the past ten years studying a concept that she calls Wholeheartedness.

Watch the video here 

Even though we do everything we can to mask our vulnerabilities as special needs parents it might just be the very thing that pulls us through.

The 11 Super Powers of ADHD Children

Elsa Struwig (Owner, Elsa Struwig Centre for Trauma and Play Therapy) pointed out the following fantastic super powers of ADHD children.

It reminded me that we do not think about this enough!!

Here it is:

#1:  They have boundless energy!

People feed off energy.

#2:  Creativity comes easy

They make great artists, scientists and creative types. Their brains are naturally interesting and inventive.

#3:  They think differently.

They might discover the creative solution that no one would ever think of.

#4: They have an amazing talent for detail.

They actually have the ability to focus, their focus looks different than it does in other people.

#5: They rock the things they are passionate about with hyper focus.

#6: They have serious resilience.

Their talent for quickly shifting gears helps them stay resilient in life.

#7:  They are sensitive to others’ differences.

Since they are a little different and get what it’s like to feel this way, they understand when those around them could use a little empathy for their own unique characteristics.

#8:  They are spontaneous!

“Boring” is not a word that is usually applied to them. With a million ideas a minute, they are not willing to get mired down by routine.

#9. They are willing to take risks.

Taking risks is necessary for achieving big rewards – after all, one can only accomplish so much while staying in your comfort zone.

#10. They are enthusiastic!

Their boundless energy means they’re usually bursting with enthusiasm about the things that excite them. Is it better to go through life feeling super enthusiastic, or bored?

#11.   They have a world class imagination.

Many people with ADHD lead rich inner-lives, and are prone to long and deep daydreaming. They can use this imaginative talent to write incredible stories, dream up new inventions, or anything you want! The world is their oyster…

Remind your superhero of his super powers and see how you both start looking at life from a different angle.

Written by Johanni Meiring

For more about Coach Johanni click here: www.johannimeiring.com

 

The Secret Struggles of an ADHD Parent

Dalene Reyburn wrote a blog a while ago.  The heading of the blog was: “Dear Special Needs Parent: I see you … “. Those words hit me like a fist in the gut. Who knew? Someone sees me and acknowledges me.

Today I’d like to say: “Dearest parent of your amazing ADHD child … I see you.”  Why?  I am also like you.  I am tired and happy! Angry and frustrated.  Full of hope today and feel like I want crawl into a whole and die the next.  You are not alone!

My daughter has been diagnosed with Autism and my son with ADHD.  Even though Autism has a bundle of issues to handle daily.  Sometimes the ADHD part of our lives feel more challenging.  Challenging not because of all the differences our child has, but because of the similarities. A child with ADHD is not recognized quickly, he or she is only another boy or a girl in a group.  Our kids are therefore not seen as someone struggling with difficulties, but mostly seen for just being a very difficult, naughty, picky, over energetic, depressed, dreamy (And the list continues) …person.

Initially we try to educate people, family and friends to understand ADHD better.  We try to explain our children’s behavior, but then the energy and emotions start losing momentum.  You’ll explain if someone asks about it, but overall you start dealing with the judgment and stares in your own unique way.  You are built to survive.

Thank you for surviving!  You did not choose this challenge and journey.  It chose you.  Just keep on walking.  If you keep on walking somehow between tonight and tomorrow morning the impossible seems possible again, the pain not so painful. In the morning somehow your ability to fight for your child seems to reset.

Waking up without ADHD in your house is unfortunately not an option.  If initially you feel the very strong desire to ignore this thing until it disappears take heart, you are not a bad parent.  I think we all do denial at some level or at some stage in this journey.  Just try not to stay there. It serves a purpose, I believe, but when left too long, denial can and will hurt your relationship with your child.

When we first received diagnoses, my knee jerk reaction was: “But why?”  The answers come packaged in neatly in gently rehearsed phrases like: “It has a strong genetic occurrence” or “There is no specific one cause”.  Then you have to deal with this reality: “Your child is struggling because of your genes”.  How do you deal with that? You either choose not to look at that reality, or you just feel lousy, guilty and failing terribly at parenting, just because of your genes…you didn’t even do anything yet.

To be totally honest, I have only been looking at the fact that: part of me contributed to the ADHD diagnoses…recently.  It is easier to deal with it when it is on the outside, almost easier to digest, because you can look at the “syndrome”.  You can examine it.  Only when you start to accept the reality that you might carry parts of ADHD, does it start to become a bit scary, but yet less intimidating. 

I am rambling on about your genes, because I believe that YOU were built to parent this child.  Nothing in them is so foreign that you cannot recognize him or her as your child.  Yes, at times it might seem like you received a wrong address child from another country, but if you look long and hard enough you’ll see it, and feel it. You will recognize her likes and dislikes, the way he butters his toast, the manner in which she sits at a table and remember you were made in the same factory.

You know how to help your child, look inside of you, AND take advice from strangers.  There are many ways to kill a cat.  Keep on searching till you find that amazing spot of sunshine for your child.  He is fearfully and wonderfully made, God did not look away, His eyes were on her when she was formed.

The world would have been terribly boring if everyone fit the mold.  ADHD kids do not fit the mold.  They challenge, they excite and they scare the daylights out of any unsuspecting parent.  They are the colour in a black and white world.

If your child can understand it, encourage them with it.  Remind them, remind yourself.  The things that might get him in trouble today at school, might just be the exact same thing that opens a door to technological breakthrough tomorrow.

Can you see how positive this perspective is?  Congratulations! You are raising a super hero.

Remember, with great power comes great responsibility.

Written by Johanni Meiring

For more about Coach Johanni click here: www.johannimeiring.com 

Do you feel helpless in your special needs journey? 

In this video Nico Liebenberg – Life & Executive Coach and Co- founder of Parent Reality shares his experiences as a Dad of special needs children. 

Watch this video

For more about Nico click here: https://dustconsulting.co.za/author/nicoliebenberg/

Stronger Than We Know (Open Heart Surgery) – By Jillian Benfield

I hate clichés. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year.

When you get a Down syndrome diagnosis, you hear a lot of clichés from a lot of well-intentioned people. I suspect anytime someone gets life-changing news, clichés like: “God doesn’t give you more than you can handle,” (which I find to be incredibly off-based on multiple levels) start rolling in…

To Read more click here

Does it feel like special needs parenting has robbed you of life?

Johanni Meiring (Mom and Parent Coach) shares these 4 Ways to TAKE YOUR LIFE BACK :

1️⃣ Surrender your fears to God

2️⃣ Remember the time before kids – your passions and dreams

3️⃣ Get to know yourself deeply

4️⃣ Give yourself permission to love life

Click here for the video where she discusses these elements as part of the third key in her book :

SPECIAL NEEDS SPECIAL LIFE

Watch this video

For more about Coach Johanni click here: https://johannimeiring.com/

 

Out of Your Comfort Zone

22 April 2021

-By Andrea Lehmensich

I am sure each of us, or most of us, never thought when we became pregnant that we would be a parent of a special needs child. Life has thrown a curve ball, and for some more than one.

Allow me to educate you. You are the most powerful person in your son- or daughter’s life. You are the one that will be tested to degrees you never thought you would be, try things you never thought you would and react in ways you never thought you needed to.

You are brave.

You are strong.

You are resilient.

You are an over-comer.

Your child’s first contact when they see life is not fair. You have to keep the sun shining for them when everyone in the world sends them rain.

Never underestimate the strengths and powers you have as a parent of a special needs child.

Please tell me if you feel the same, but I feel like my daughter’s therapist, guidance counsellor, doctor, nurse, teacher, researcher, friend, and Mom. We are there 24/7, day or night, in good times and in bad times.

I stopped counting how many times my daughter and I WhatsApp each other in a day. She even video calls me at lunch time for a few minutes so she can see my face and say “Hi”. For some Moms this may be a bit much but for me, a mom who has a daughter with general anxiety and separation anxiety, this is life Contact means everything to her, especially since I am gone by 6am and only back by 5.30pm. Its her lifeline. It keeps her in a good space during the day and I made a choice to always make her a priority even when I am away.

Our journeys with our kids are not the same and that is perfectly OK. Our kids do not have to be on the same lane as anyone else, and they do not have to rush anything they don’t feel ready to do either. Tell yourself its ok that they are different, act differently, react differently, do things differently. God made us all unique and our kids do not have to fit in to any form that the world says is normal.

Know that where you are now even on the darkest days, is where you are supposed to be and even though you can’t see very far ahead just taking one step at a time is absolutely fine.

No one can tell you where you’re supposed to be with your child, because believe me all the baby books in the world don’t help. It’s a learning process for our kids and for us, and with time, research and consistency we get better at it.

If you’re not out of your comfort zone, you wont grow and neither will your child. As special needs parents we need to think outside the box, do weird and amazing things to get our kids where they need to go. That is why Google is my best friend lol! Researching all kind of different things, from workbooks, to weighted blankets, to activities, to how to set boundaries and establish routines and through trial and error, I found what worked for me.

Necessity is the mother of invention so don’t limit yourself! You are a warrior, far more adaptable than you realize and you are the one person that will give your child unlimited, unconditional support and love forever. Never doubt the impact you have on their lives, even if it takes years to show.

God chose you for a reason as the parent of a special need child and it will change you in ways that I cannot fully explain. All I know is my daughter brought the best out of me and in doing so I have given her the best in me.

“If it doesn’t challenge you, it doesn’t change you” – Fred Devito

 

The Positive Side of Life

10 March 2021

-By Andrea Lehmensich

‘Parenthood is about raising and celebrating the child you have, not the child you thought you’d have.’ – Joan Ryan

I am a mom to a daughter with intellectual disabilities in addition to general anxiety and separation anxiety. I work full-time, as I have not had the opportunity to work from home, so Faith had to go to aftercare etc. Faith is 18 now and has bloomed into a beautiful, kind, caring and loving young woman. I can truly say the last 18 years were very difficult and brought many challenges, but we focus on the good, not the bad and refuse to let her disabilities define who she is.

From one parent simply trying to make it, to another, this is what anchors me daily:

Joy

Find joy in your child every day. Accept who they are – the gift God has given you – and embrace their uniqueness, their special ways and the connection you have. That is something most normal parents never have with their children. Find joy in the beauty of what they say, or when they make you laugh, or how they make others feel. Our children are a gift to this broken world. They bring light into a dreary and cold world and make the sunshine just a little bit brighter. They make hope possible.

Hope

Find hope in all circumstances. Never give up, never surrender. You may need a cry, a coffee, or a day in bed, but giving up is not an option. Hope is what motivates us to get up every day and make sure their routine is sorted and that they are in a good space as they wake up and start their day. Hope is fundamental when there are days that seem overwhelming.

Faith

I am a Christian. I believe in God and I believe God’s gift was my daughter, the biggest challenge of my life, and God moulded me into the Mom she needed. He has grown my faith; He has given me strength I never thought I had, and He has been my anchor throughout the last 18 years. When my body felt so weary, my spirit was strong, and He kept me going. Giving that faith to your kids is important too, as it helps them focus on believing in themselves and shows them that they too have a purpose in life.

Peace

I can truly say God has given me a peace inside me when the chaos surrounds me – patience to deal with tantrums and issues in a calm way. Your peace is so important because the way you handle a situation is the way you teach your child to handle a situation. You must remember that we are all flawed and broken, and they are still learning how to navigate life, handle their problems and develop coping mechanisms for whatever they are going through. Find your own peace, take time for you. You cannot give from an empty cup so keep yourself healthy and find yourself. I found a hobby – painting by numbers – and it is my saving grace. I sit and do it for myself to fill me up again. Maybe read a book, go jogging, go to the gym, watch a series – whatever it is, find me time. I cannot emphasize this enough. We give a lot and forget that we must give a little to ourselves as well or we are no good to our children.

Positivity

You think they do not hear you, but they do. For years, because my daughter has anxiety, her brain would default to negative as soon as she woke up and I refused to let that happen. So, every morning I sent her a positive quote or motivational video. Just something to bring a smile. For 10 years I had been doing this unsure if it would make an impact, until one day my daughter came to me and told me about being positive and all the things she has learned. 10 years of motivating her changed her way of thinking. Yes, there are still bad days but the good days outweigh them now

Love

Just love them, that is all. Unconditional, all-consuming love on the bad days, on the good days and on the OK days. Love covers everything. It is the one thing they need when the world seems so cruel, and they don’t feel like they belong. Remember it is always the small things that matter. The time you give them fully, deciding to leave the dishes for later, sitting and watching a movie with them, going for a drive or a walk to embrace nature. Live life to the fullest capacity so that they can see that life is good.

__________________________

I did not want to write this focusing on all the negative aspects of having a child with special needs, because regardless of the challenges they face, life is beautiful, and they need to see that and experience that. We have been given this enormous opportunity to shape our children’s lives. To show them that regardless of your challenges you can rise and impact others and the world. Find their passion, focus on what they can do, not what they can’t, and grow in that. I want to show Faith every day that her struggles the last 18 years have not been in vain. That she is important, valued and enough.

I found some quotes to help you stay motivated:

“Being a mother is learning about the strengths you didn’t know you had, and dealing with fears you didn’t know existed” – Linda Wooten

“Live so that when your children think of love, fairness, integrity, and tenderness they think of you” – Author Unknown

“Children are not a distraction from more important work. They are the most important work.” – C.S. Lewis

“Once you choose hope, anything’s possible.” – Christopher Reeve

My prayer is that this blog brought you a smile, a small sense of hope, and that you embrace your child and find joy in everything. Life is beautiful, we just need to focus on what is truly important for us as parents and for our kids.

Be a light, focus on small goals and achievements, and always hold on to hope.

Surviving and Thriving

15 February 2021

In this world of parenting kids with special needs, people always talk about surviving versus thriving.

Having not one, but two special kiddos have changed my life in profound ways. My motto (as a parent) has always been: “Do whatever you need to survive.”

And I have. And almost eleven years in, we are all still alive and most days doing okay.

I feel like there is such emphasis on “thriving, not just surviving” in this special needs parenting journey when BOTH are possible at the same time. And it is okay.

There are bad days and good days, drama and smiles, coffee and wine, regression and progression. Not everything is a straight line. While it can be really, insanely hard some days, don’t forget to look for the joy in moments too.

God knows exactly who He gave us as children to raise. He knows every single thing about us and still chose us to be their parents.

Most days I have NO idea as to why or what I am doing, but each day He gives me the exact amount of grace needed.

So whether you have a little angry, non-sleeping baby, or a first grader with behavioral challenges, or an eleven-year-old that still needs you to sleep by them, or a seventeen-year-old that still loves Barney and is on nappies, keep on doing what you are doing.

We may never know the “why’s” until we get to heaven and have a LONG conversation with Jesus (with video playback) and see the bottle of our tears and the crowns, but until then, keep going. You can survive and thrive and still be okay. This life is not easy, but it is worth it. One day, one hour, one minute at a time.

Sending hugs, love, coffee or tea, and wine

Heidi Vermaak

Mom of two amazing kids who have a variety of needs. “Brain damage due to oxygen loss” tends to be the “diagnosis” and every day is a surprise as to what we will be dealing with. Gr. 1 and Gr. 4 are about to start this year, so pray for us!

My Shadow

15 January 2021

I am a special needs mom to my beautiful daughter on the Autism Spectrum, and the one thing that has remained consistent since before her diagnosis:

The realization that she is and will always be, my shadow. Always with me wherever I go. 

Other than her great relationship with her sister, there are no friends, birthday party invites, sleepovers, movie nights with friends, school dances or team sports.

With being a Special needs parent comes isolation, some experience it more than others, but it is a given. It takes patience to get used to and accept the new dynamic your family’s life shifts into.

As time goes by, you learn to embrace this new lifestyle as a family and so much beauty can grow from it.  You learn things you might not have learned in life e.g what really matters in life, to be grateful for every victory, no matter how big or small, you are your child’s advocate and you are not as alone on this journey as you might think or feel.

I am grateful for this journey and remind myself of that especially on the hard days!

Written by Carlè du Plessis 

 

The Power of Vulnerability

Watch a talk by Dr. Brené Brown about the power of vulnerability. Brown is a researcher professor at the University of Houston, Graduate College of Social Work, where she has spent the past ten years studying a concept that she calls Wholeheartedness.

Watch the video 

HERE

Even though we try to consistently hide our vulnerability as special needs parents, it might be just this that pulls us through.

The 11 Super Powers of ADHD Children

Elsa Struwig (Owner, Elsa Struwig Centre for Trauma and Play Therapy) pointed out the following fantastic super powers of ADHD children.

It reminded me that we do not think about this enough!!

Here it is:

#1:  They have boundless energy!

People feed off energy.

#2:  Creativity comes easy

They make great artists, scientists and creative types. Their brains are naturally interesting and inventive.

#3:  They think differently.

They might discover the creative solution that no one would ever think of.

#4: They have an amazing talent for detail.

They actually have the ability to focus, their focus looks different than it does in other people.

#5: They rock the things they are passionate about with hyper focus.

#6: They have serious resilience.

Their talent for quickly shifting gears helps them stay resilient in life.

#7:  They are sensitive to others’ differences.

Since they are a little different and get what it’s like to feel this way, they understand when those around them could use a little empathy for their own unique characteristics.

#8:  They are spontaneous!

“Boring” is not a word that is usually applied to them. With a million ideas a minute, they are not willing to get mired down by routine.

#9. They are willing to take risks.

Taking risks is necessary for achieving big rewards – after all, one can only accomplish so much while staying in your comfort zone.

#10. They are enthusiastic!

Their boundless energy means they’re usually bursting with enthusiasm about the things that excite them. Is it better to go through life feeling super enthusiastic, or bored?

#11.   They have a world class imagination.

Many people with ADHD lead rich inner-lives, and are prone to long and deep daydreaming. They can use this imaginative talent to write incredible stories, dream up new inventions, or anything you want! The world is their oyster…

Remind your superhero of his super powers and see how you both start looking at life from a different angle.

Written by Johanni Meiring

For more about Coach Johanni click here: www.johannimeiring.com

 

The Secret Struggles of an ADHD Parent

Dalene Reyburn wrote a blog a while ago.  The heading of the blog was: “Dear Special Needs Parent: I see you … “. Those words hit me like a fist in the gut. Who knew? Someone sees me and acknowledges me.

Today I’d like to say: “Dearest parent of your amazing ADHD child … I see you.”  Why?  I am also like you.  I am tired and happy! Angry and frustrated.  Full of hope today and feel like I want crawl into a whole and die the next.  You are not alone!

My daughter has been diagnosed with Autism and my son with ADHD.  Even though Autism has a bundle of issues to handle daily.  Sometimes the ADHD part of our lives feel more challenging.  Challenging not because of all the differences our child has, but because of the similarities. A child with ADHD is not recognized quickly, he or she is only another boy or a girl in a group.  Our kids are therefore not seen as someone struggling with difficulties, but mostly seen for just being a very difficult, naughty, picky, over energetic, depressed, dreamy (And the list continues) …person.

Initially we try to educate people, family and friends to understand ADHD better.  We try to explain our children’s behavior, but then the energy and emotions start losing momentum.  You’ll explain if someone asks about it, but overall you start dealing with the judgment and stares in your own unique way.  You are built to survive.

Thank you for surviving!  You did not choose this challenge and journey.  It chose you.  Just keep on walking.  If you keep on walking somehow between tonight and tomorrow morning the impossible seems possible again, the pain not so painful. In the morning somehow your ability to fight for your child seems to reset.

Waking up without ADHD in your house is unfortunately not an option.  If initially you feel the very strong desire to ignore this thing until it disappears take heart, you are not a bad parent.  I think we all do denial at some level or at some stage in this journey.  Just try not to stay there. It serves a purpose, I believe, but when left too long, denial can and will hurt your relationship with your child.

When we first received diagnoses, my knee jerk reaction was: “But why?”  The answers come packaged in neatly in gently rehearsed phrases like: “It has a strong genetic occurrence” or “There is no specific one cause”.  Then you have to deal with this reality: “Your child is struggling because of your genes”.  How do you deal with that? You either choose not to look at that reality, or you just feel lousy, guilty and failing terribly at parenting, just because of your genes…you didn’t even do anything yet.

To be totally honest, I have only been looking at the fact that: part of me contributed to the ADHD diagnoses…recently.  It is easier to deal with it when it is on the outside, almost easier to digest, because you can look at the “syndrome”.  You can examine it.  Only when you start to accept the reality that you might carry parts of ADHD, does it start to become a bit scary, but yet less intimidating. 

I am rambling on about your genes, because I believe that YOU were built to parent this child.  Nothing in them is so foreign that you cannot recognize him or her as your child.  Yes, at times it might seem like you received a wrong address child from another country, but if you look long and hard enough you’ll see it, and feel it. You will recognize her likes and dislikes, the way he butters his toast, the manner in which she sits at a table and remember you were made in the same factory.

You know how to help your child, look inside of you, AND take advice from strangers.  There are many ways to kill a cat.  Keep on searching till you find that amazing spot of sunshine for your child.  He is fearfully and wonderfully made, God did not look away, His eyes were on her when she was formed.

The world would have been terribly boring if everyone fit the mold.  ADHD kids do not fit the mold.  They challenge, they excite and they scare the daylights out of any unsuspecting parent.  They are the colour in a black and white world.

If your child can understand it, encourage them with it.  Remind them, remind yourself.  The things that might get him in trouble today at school, might just be the exact same thing that opens a door to technological breakthrough tomorrow.

Can you see how positive this perspective is?  Congratulations! You are raising a super hero.

Remember, with great power comes great responsibility.

Written by Johanni Meiring

For more about Coach Johanni click here: www.johannimeiring.com 

Do you feel helpless in your special needs journey? 

In this video Nico Liebenberg – Life & Executive Coach and Co- founder of Parent Reality shares his experiences as a Dad of special needs children. 

Watch this video

For more about Nico click here: https://dustconsulting.co.za/author/nicoliebenberg/

Stronger Than We Know (Open Heart Surgery) – By Jillian Benfield

I hate clichés. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year.

When you get a Down syndrome diagnosis, you hear a lot of clichés from a lot of well-intentioned people. I suspect anytime someone gets life-changing news, clichés like: “God doesn’t give you more than you can handle,” (which I find to be incredibly off-based on multiple levels) start rolling in…

To Read more click here

Does it feel like special needs parenting has robbed you of life?

Johanni Meiring (Mom and Parent Coach) shares these 4 Ways to TAKE YOUR LIFE BACK :

1️⃣ Surrender your fears to God

2️⃣ Remember the time before kids – your passions and dreams

3️⃣ Get to know yourself deeply

4️⃣ Give yourself permission to love life

Click here for the video where she discusses these elements as part of the third key in her book :

SPECIAL NEEDS SPECIAL LIFE

Watch this video

For more about Coach Johanni click here: https://johannimeiring.com/

 

Out of Your Comfort Zone

22 April 2021

-By Andrea Lehmensich

I am sure each of us, or most of us, never thought when we became pregnant that we would be a parent of a special needs child. Life has thrown a curve ball, and for some more than one.

Allow me to educate you. You are the most powerful person in your son- or daughter’s life. You are the one that will be tested to degrees you never thought you would be, try things you never thought you would and react in ways you never thought you needed to.

You are brave.

You are strong.

You are resilient.

You are an over-comer.

Your child’s first contact when they see life is not fair. You have to keep the sun shining for them when everyone in the world sends them rain.

Never underestimate the strengths and powers you have as a parent of a special needs child.

Please tell me if you feel the same, but I feel like my daughter’s therapist, guidance counsellor, doctor, nurse, teacher, researcher, friend, and Mom. We are there 24/7, day or night, in good times and in bad times.

I stopped counting how many times my daughter and I WhatsApp each other in a day. She even video calls me at lunch time for a few minutes so she can see my face and say “Hi”. For some Moms this may be a bit much but for me, a mom who has a daughter with general anxiety and separation anxiety, this is life Contact means everything to her, especially since I am gone by 6am and only back by 5.30pm. Its her lifeline. It keeps her in a good space during the day and I made a choice to always make her a priority even when I am away.

Our journeys with our kids are not the same and that is perfectly OK. Our kids do not have to be on the same lane as anyone else, and they do not have to rush anything they don’t feel ready to do either. Tell yourself its ok that they are different, act differently, react differently, do things differently. God made us all unique and our kids do not have to fit in to any form that the world says is normal.

Know that where you are now even on the darkest days, is where you are supposed to be and even though you can’t see very far ahead just taking one step at a time is absolutely fine.

No one can tell you where you’re supposed to be with your child, because believe me all the baby books in the world don’t help. It’s a learning process for our kids and for us, and with time, research and consistency we get better at it.

If you’re not out of your comfort zone, you wont grow and neither will your child. As special needs parents we need to think outside the box, do weird and amazing things to get our kids where they need to go. That is why Google is my best friend lol! Researching all kind of different things, from workbooks, to weighted blankets, to activities, to how to set boundaries and establish routines and through trial and error, I found what worked for me.

Necessity is the mother of invention so don’t limit yourself! You are a warrior, far more adaptable than you realize and you are the one person that will give your child unlimited, unconditional support and love forever. Never doubt the impact you have on their lives, even if it takes years to show.

God chose you for a reason as the parent of a special need child and it will change you in ways that I cannot fully explain. All I know is my daughter brought the best out of me and in doing so I have given her the best in me.

“If it doesn’t challenge you, it doesn’t change you” – Fred Devito

 

The Positive Side of Life

10 March 2021

-By Andrea Lehmensich

‘Parenthood is about raising and celebrating the child you have, not the child you thought you’d have.’ – Joan Ryan

I am a mom to a daughter with intellectual disabilities in addition to general anxiety and separation anxiety. I work full-time, as I have not had the opportunity to work from home, so Faith had to go to aftercare etc. Faith is 18 now and has bloomed into a beautiful, kind, caring and loving young woman. I can truly say the last 18 years were very difficult and brought many challenges, but we focus on the good, not the bad and refuse to let her disabilities define who she is.

From one parent simply trying to make it, to another, this is what anchors me daily:

Joy

Find joy in your child every day. Accept who they are – the gift God has given you – and embrace their uniqueness, their special ways and the connection you have. That is something most normal parents never have with their children. Find joy in the beauty of what they say, or when they make you laugh, or how they make others feel. Our children are a gift to this broken world. They bring light into a dreary and cold world and make the sunshine just a little bit brighter. They make hope possible.

Hope

Find hope in all circumstances. Never give up, never surrender. You may need a cry, a coffee, or a day in bed, but giving up is not an option. Hope is what motivates us to get up every day and make sure their routine is sorted and that they are in a good space as they wake up and start their day. Hope is fundamental when there are days that seem overwhelming.

Faith

I am a Christian. I believe in God and I believe God’s gift was my daughter, the biggest challenge of my life, and God moulded me into the Mom she needed. He has grown my faith; He has given me strength I never thought I had, and He has been my anchor throughout the last 18 years. When my body felt so weary, my spirit was strong, and He kept me going. Giving that faith to your kids is important too, as it helps them focus on believing in themselves and shows them that they too have a purpose in life.

Peace

I can truly say God has given me a peace inside me when the chaos surrounds me – patience to deal with tantrums and issues in a calm way. Your peace is so important because the way you handle a situation is the way you teach your child to handle a situation. You must remember that we are all flawed and broken, and they are still learning how to navigate life, handle their problems and develop coping mechanisms for whatever they are going through. Find your own peace, take time for you. You cannot give from an empty cup so keep yourself healthy and find yourself. I found a hobby – painting by numbers – and it is my saving grace. I sit and do it for myself to fill me up again. Maybe read a book, go jogging, go to the gym, watch a series – whatever it is, find me time. I cannot emphasize this enough. We give a lot and forget that we must give a little to ourselves as well or we are no good to our children.

Positivity

You think they do not hear you, but they do. For years, because my daughter has anxiety, her brain would default to negative as soon as she woke up and I refused to let that happen. So, every morning I sent her a positive quote or motivational video. Just something to bring a smile. For 10 years I had been doing this unsure if it would make an impact, until one day my daughter came to me and told me about being positive and all the things she has learned. 10 years of motivating her changed her way of thinking. Yes, there are still bad days but the good days outweigh them now

Love

Just love them, that is all. Unconditional, all-consuming love on the bad days, on the good days and on the OK days. Love covers everything. It is the one thing they need when the world seems so cruel, and they don’t feel like they belong. Remember it is always the small things that matter. The time you give them fully, deciding to leave the dishes for later, sitting and watching a movie with them, going for a drive or a walk to embrace nature. Live life to the fullest capacity so that they can see that life is good.

__________________________

I did not want to write this focusing on all the negative aspects of having a child with special needs, because regardless of the challenges they face, life is beautiful, and they need to see that and experience that. We have been given this enormous opportunity to shape our children’s lives. To show them that regardless of your challenges you can rise and impact others and the world. Find their passion, focus on what they can do, not what they can’t, and grow in that. I want to show Faith every day that her struggles the last 18 years have not been in vain. That she is important, valued and enough.

I found some quotes to help you stay motivated:

“Being a mother is learning about the strengths you didn’t know you had, and dealing with fears you didn’t know existed” – Linda Wooten

“Live so that when your children think of love, fairness, integrity, and tenderness they think of you” – Author Unknown

“Children are not a distraction from more important work. They are the most important work.” – C.S. Lewis

“Once you choose hope, anything’s possible.” – Christopher Reeve

My prayer is that this blog brought you a smile, a small sense of hope, and that you embrace your child and find joy in everything. Life is beautiful, we just need to focus on what is truly important for us as parents and for our kids.

Be a light, focus on small goals and achievements, and always hold on to hope.

Surviving and Thriving

15 February 2021

In this world of parenting kids with special needs, people always talk about surviving versus thriving.

Having not one, but two special kiddos have changed my life in profound ways. My motto (as a parent) has always been: “Do whatever you need to survive.”

And I have. And almost eleven years in, we are all still alive and most days doing okay.

I feel like there is such emphasis on “thriving, not just surviving” in this special needs parenting journey when BOTH are possible at the same time. And it is okay.

There are bad days and good days, drama and smiles, coffee and wine, regression and progression. Not everything is a straight line. While it can be really, insanely hard some days, don’t forget to look for the joy in moments too.

God knows exactly who He gave us as children to raise. He knows every single thing about us and still chose us to be their parents.

Most days I have NO idea as to why or what I am doing, but each day He gives me the exact amount of grace needed.

So whether you have a little angry, non-sleeping baby, or a first grader with behavioral challenges, or an eleven-year-old that still needs you to sleep by them, or a seventeen-year-old that still loves Barney and is on nappies, keep on doing what you are doing.

We may never know the “why’s” until we get to heaven and have a LONG conversation with Jesus (with video playback) and see the bottle of our tears and the crowns, but until then, keep going. You can survive and thrive and still be okay. This life is not easy, but it is worth it. One day, one hour, one minute at a time.

Sending hugs, love, coffee or tea, and wine

Heidi Vermaak

Mom of two amazing kids who have a variety of needs. “Brain damage due to oxygen loss” tends to be the “diagnosis” and every day is a surprise as to what we will be dealing with. Gr. 1 and Gr. 4 are about to start this year, so pray for us!

My Shadow

15 January 2021

I am a special needs mom to my beautiful daughter on the Autism Spectrum, and the one thing that has remained consistent since before her diagnosis:

The realization that she is and will always be, my shadow. Always with me wherever I go. 

Other than her great relationship with her sister, there are no friends, birthday party invites, sleepovers, movie nights with friends, school dances or team sports.

With being a Special needs parent comes isolation, some experience it more than others, but it is a given. It takes patience to get used to and accept the new dynamic your family’s life shifts into.

As time goes by, you learn to embrace this new lifestyle as a family and so much beauty can grow from it.  You learn things you might not have learned in life e.g what really matters in life, to be grateful for every victory, no matter how big or small, you are your child’s advocate and you are not as alone on this journey as you might think or feel.

I am grateful for this journey and remind myself of that especially on the hard days!

Written by Carlè du Plessis