Dyslexia

My dyslexia is getting worse as well as dissociation (amnesia - short term memory loss) the more I age. My mom told me as a child that her doctor stated I would never amount to anything and would never talk. I broke those barriers and started talking around age 3. But I guess time reverses when you have a mental illness when you start to get to a certain age. I have accomplished a lot I feel in my lifetime and will keep accomplishing until whenever. I am an emotional fighter even dealing with a narc mom and dad. I stayed partially sane. But this is what I wanted to say at this moment. Enjoy your evening. #ADHD #Autism #BipolarDisorder #BorderlinePersonalityDisorder

Some that have BPD also suffer from dyslexia are you part of this category? #ADHD #Autism #bpdworld #BorderlinePersonalityDisorder #IrritableBowelSyndromeIBS #Depression #BipolarDisorder

This is the Group Owner of Mental Health World...

My Life: I suffer from not only BPD but I also suffer from IBS & Dyslexia. Yeah there are times that my life really sucks! But I tend to always bounce back and keep myself distracted from my many mental illnesses #ADHD #Autism #BorderlinePersonalityDisorder #IrritableBowelSyndromeIBS #Dyslexia

Hi I’m Evad5 and I joined like a week ago. I saw a lot of people doing a im new here post so here I am I have #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicHeadaches #endometreosis #Dyslexia #Anxiety #Depression #SensoryProcessingDisorder #Dysphagia

I wish that kids with disabilities and complex needs would get the support they require to not just survive but thrive. I wish they had the education, learning supports, therapy and career counseling needed to help them live their best lives.

Sadly, this isn’t the case and is the reason why advocacy is critical to supporting kids with disabilities.

Any parent, caregiver, teacher, medical professional and service provider will tell you there aren’t enough resources for kids with disabilities – especially invisible disabilities (autism, ADHD, anxiety, dyslexia and more). As a result, kids who need help are competing against each other for limited resources, with few, if any, actually getting the full support they need.

Not a week goes by when I don’t get a phone call, email or message from a parent or caregiver of a child with disabilities or complex needs who shares their story and the roadblocks facing their child. Many of these are artificial – put there by the system (insert system name) versus true roadblocks.

And this is why many of us parents and caregivers spend exorbitant amounts of time advocacy for our kids. Time that could be better used working at our jobs (if we’re lucky enough to have one while juggling the demands of our children), spending quality time with our kids or just having 10 minutes to ourselves.

I shudder to think what would happen if I stopped advocating for my child.

Personalize the diagnosis

One of the biggest challenges we have as parents is helping the system see the child behind the diagnosis. Too often limitations and assumptions are placed on the child because of their diagnosis.  I’ve seen this as both a sister and mother of two autistic individuals.

My brother spent years struggling with a medical challenge with doctors dismissing any concerns by saying he has disabilities, it’s expected. After some strong advocacy from support workers, my brother was finally referred to a specialist where he was diagnosed with a medical condition that has nothing to do with autism.

In this case the healthcare provider couldn’t see beyond the disability to care for the person. While I wish this was an isolated incident, I’ve heard too many stories from other families to know this isn’t the case.  With my own child, they spent years in the public school system unable to read. Once again, the assumption was their autism diagnosis was likely the reason for their reading difficulties.

As a mom who’s committed to helping my child live their best life, we paid for a private pysch ed assessment. Turns out my child is dyslexic – which once again has nothing to do with autism (as we know there are many autistic individuals who are veracious readers).

Armed with this new diagnosis I was able to advocate for my child to get literacy supports that are in line with their learning style.

Hunger games

In both these examples, advocacy was the only way to help the individual.

This is concerning as there are many children whose families don’t have the energy, skill set or time to commit to advocacy. So, what happens to these kids? They are often the ones that fall between the cracks as the system isn’t set up to support their needs.

When it comes to education, we have a wait to fail approach to supporting kids. With limited resources, educators have to wait until a child’s behaviour is too disruptive to offer supports. Yet many times behavioural issues are simply an indication of a problem that needs solving or need that is unmet.

Keep on advocating

While I wish I didn’t need to spend so many hours advocating for not only my child, but other kids with disabilities, I know that advocacy is key to shining a light on their needs and helping get support – even minimal.  This is why I’ll keep on advocating.

To help make meaningful change, we need more people to lend their voice to advocate for kids with disabilities and complex needs. This means listen to the stories of families, sharing these stories with decision makers and advocating for kids who are falling through the cracks.

But raising the volume on supports needed, hopefully one day we can help kids go from surviving to thriving.

learnpatientadvocacy.com/blog/2023/1/6/why-advocacy-is-criti...

When reading something seeing words sometimes that appear and they are not really there, it can seem like your mind is playing tricks on you. You might mix up the letters in a word — for example, reading the word "now" as "won" or "left" as "felt. Words may also blend together, and spaces are lost. #ubpd #Dyslexia #BorderlinePersonalityDisorder #Bpdways

Auditory dyslexia means a person has difficulty processing the basic sounds of language. Our ability to process basic sounds is called phonemic awareness and, if your child is having trouble with this, they could have auditory dyslexia or a related auditory processing disorder.

The problem for people with BPD is that the disorder distorts both the messages they hear and those they try to express. Like “having 'aural dyslexia,' in which they hear words and sentences backwards, inside out, sideways, and devoid of context.”

I was recently at a workshop about the importance of diversity in the workplace. While I value and appreciate how far we’ve come in many areas of diversity, and the conversation on the work that’s still needed, there was a glaring absence in this discussion – neurodiversity. When I brought it up, a panelist admitted she hadn’t thought about this important group of current and potential employees. I’m sure she wasn’t the only one.

This is why we need to include neurodiversity in the diversity conversation. Approximately 15 to 20% of the world’s population exhibits some form of neurodivergence. This includes individuals with autism, ADHD, dyslexia, mental health conditions, dyspraxia, dyscalculia, Tourette syndrome and more.

Untapped skills
As a mom and sister of two autistic individuals, I know learnpatientadvocacy.com/blog/2021/6/9/its-time-to-embrace-t... they could bring to a potential employer – as well as the intense barriers they face.

My brother is in his mid-40s and has never had a paying job. He’s bright, friendly, detail oriented, loves repetition, rules and processes. He would get joy out of filling shelves, greeting customers at a large store, or packaging orders in warehouse.

Yet he remains unemployed as he doesn’t present well in an interview (avoids eye contact, tends to focus on his interests and asks way more questions than he answers). A traditional interview would in no way bring out his best. But give him a job with clear instructions and a solid routine, and he’ll show up excited every day.

The stats prove autistic adults are an untapped labour force. A 2017 study by the Public Health Agency of Canada found that only 33% of autistic adults are employed vs 79% of adults without a disability.

Diversity = safe spaces
Now what about the individuals with anxiety, ADHD, mental health conditions or dyslexia where their neurodiversity is less apparent? Due to biases, many do not disclosure their diversity in the interview process or even when they’ve been working at a job for a number of years.

When was the last time you heard of neurodiversity in the diversity training given by human resources? We have gender neutral and wheelchair accessible bathrooms, celebrate Pride Day, embrace a variety of cultures and religions, yet leave neurodiversity out of the diversity conversation.

So, how do we change this?

It starts by looking at how workplaces first started conversations about LGBTQ2+, race, religion, gender, ethnicity and other diversities. This can include biases training, rethinking the interview process and learning from organizations who’ve already walked this path. It means hiring neurodiverse employees and giving them the supports and accommodations needed to be successful vs token hires.

It’s about including neurodiversity in the diversity conversation at elementary, high school and post-secondary education institutions – at both the student and staff levels. It involves having honest conversations about how diverse your organization truly is and what needs to be done to ensure there’s a safe and supportive space for everyone.

Finally, it’s about erasing the stigma and realizing a diverse and inclusive workplace isn’t just politically correct, but will actually strengthen the organization and create positive outcomes.

New path forward
learnpatientadvocacy.com/books/how-to-make-patient-and-famil... I spend a lot of time talking about the gifts my brother, son and other amazing individuals bring to table. I’ve also seen movement to fully embrace these gifts hit artificial roadblocks in the education system and in workplaces.

Here’s my hope. I want everyone to be valued and their unique strengths and gifts recognized. I want neurodiversity to have the same space, recognition and importance in the diversity conversation as we given to other marginalized groups.

I don’t want to attend a workshop on diversity and have people say they hadn’t thought about neurodiversity. Rather, I want them to share the incredible work being done by individuals who are autistic, have ADHD, dyslexia or mental health conditions. I want them to recognize and celebrate how a diverse workplace benefits everyone and improves the bottom line.

And most importantly, I want my son to be one of the 79% of Canadians who are employed, vs being held back due to old biases, false assumptions and outdated beliefs.

It’s time to include neurodiversity in the diversity conversation. Without this shift, the diversity conversation runs the risk of being a token conversation.