Global Developmental Delay

Hi, my name is Thedesignshed1. I'm here because I have severe arthritis in my hands and fybromyalgia, I’m suffered from complex PTSD and live with generalised anxiety disorder. I am a single parent and carer for 3 children with disabilities, my oldest is 19 with autism, ocd, type 1 diabetes, and challenging behaviour, my 17 year old has epilepsy and my 15 year old has autism and global developmental delay. I’m exhausted all the time and find it hard to get any relaxation time, life has got easier over the years but I’m getting older and more tired. I’d like to put the fun back into life and feel like I’m living instead of just existing.

#MightyTogether #Anxiety #Fibromyalgia #PTSD

Part 1 of 2 When it comes to having a disabled child, their path from birth to end of life, has no comparison. Their journey, their development, their abilities are completely incapable of being predicted. There may be some similarities from case to case if it is a similar genetic anomaly or condition, but you really can’t predict what feats they will accomplish. So, when your child is born disabled or when you get that diagnosis that tells you, your child will be deviating from the “norm”, it is almost incomprehensible.

While the news feels overwhelming, almost immediately, you can adjust and rewrite that vision for your child’s future based on commonalities between children of similar diagnoses. I have mentioned before, the devastation when you have no idea what your child’s life will look like after a shocking diagnosis, but there is also a rebuilding. A restructuring of your own mind to absorb this lofty information even when it’s heartbreaking. You find ways to accept it and move forward with a new perspective. The perspective of understanding and love for the child you received and the child you would be raising. Different than your original vision, but equally rewarding.

BUT, what happens when there is no defining moment for rewriting your child’s future in your mind? What happens when all you are given is “hope” that your child will catch up someday and be like a typical kiddo? What happens when you are comforted by friends, doctors, therapists, and social workers with works like “there’s a chance to catch up,” “keep pushing,” “The more therapy at this age the better,” “don’t give up”. Well, you don’t have to wonder what happens, I can tell you. As a caregiver that stayed at home, whose primary job was to care for my son who had global developmental delay, but no official diagnosis, I had HOPE and was constantly given hope by others. I was actively seeking hope from others. I held on so tightly to the hope that one day my son would catch up and be like every other typical child walking the Earth. It wasn’t just hope I held onto, but it was the idea that I could control it. I was under the impression that the harder I worked, the more likely my child would one day make it to where he needed to be, to the land of the typical kid, to the world in which children were running and playing and talking and agile and exceptionally communicative, and generally easier than the child I had before me. I yearned for that and had no reason to believe we wouldn’t make it there based on my conversations with the professionals. If I was diligent enough. Committed enough. Good enough.

Don’t get me wrong, there was some talk, especially as my son got older, about him not yet meeting his milestones, but it was all about WHEN. I was truly under the impression that he would eventually meet all of his milestones; it would just be later. There was no difficult conversation about when and how to reframe my mind, my brain, my hope, to be more flexible, reasonable, and accepting of my child as he was, right in that moment. It was all about the future and what it might hold for him and along the way. Eventually, the hope I was holding out for him was so radical that it had evolved. It was no longer an underlying optimism that the concept of hope perpetuates, it was ableism. I was failing to accommodate my child in my desperate attempts to make him “normal”.

To top it off, I was holding my grief so tightly, that I couldn’t possibly accept, because I was in denial. Denial that my child would be anything but what I had imagined him to be, and I could make him that way if I worked hard enough. Denial that he would never be up to par with his peers. Denial that his life wasn’t going to be measured by the developmental trajectory for children that he was expected to adhere to.

My grief was trapped, rooted in denial, and my hope was rooted in ableism. It wasn’t until my son was three-and-a-half and began having seizures that the floodgates of truth finally flung open. It was a concrete enough diagnosis for me to finally recognize that my child was sick, he was disabled, and he was never going to catch up. I realized the child I had NOW was the person I needed to love and fully accept so we could move forward as a functional family.

While I hated that he was sick and a part of me died inside when I watched his body helplessly convulsing in his bed, I also watched myself break open and finally admit that I had absolutely no control. That no matter what I did, I would never “fix” my child. And no matter how hard I worked; he would never become typical just because I brought him to therapy. He wasn’t going to “catch up”, ever.

My hope, my ableist hope, was erased and my grief came pouring out of me. And with all of that pain, ACCEPTANCE finally found me and gave me the comfort I so badly needed all those years before.

Being so new I didn't realise I could add more to my first post, so here we go again! 😅

Hi, my name is SnoethaFinnwell. I’m new to The Mighty. I'm a father of 4 boys.

"S" & "N" are 13 year old twins & both on the autism spectrum. "S" is also diagnosed with ODD (oppositional defiance disorder). "N" is also on the adhd spectrum. Both boys live with the anxiety and depression that comes with it.

"M" is 12 years old & on the adhd spectrum with ODD. He's also got a high IQ so is easily bored in class, and then get himself in mischief and trouble!

My youngest, at 3 years old is "F". At 18 months old "F" was diagnosed with GGD (global developmental delay). In December last year he finally received his very expected asd diagnosis too. "F" (& mum & dad) has been lucky enough have the support of an amazing speech therapist and occupational therapist since his GDD diagnosis. His OT learning is close to where is should be for his age but his speech is still very delayed, at around 1.5 year old level. He certainly know how to tell us what he wants though 😅

For myself, about 5 years ago I realised that my life long depression & anger issues were a presentation of anxiety. Meds & a new counsellor helped me to work through it but it wasn't until early 2020, at 37 years old I joined at Facebook group "ADHD memes" thinking it would be a bit of a relatable laugh, considering my 2 adhd boys. Well it was relateable in a wholly expected sense! My life finally made sense when I received my own adhd diagnosis in November 2020.

Since then I've learnt so much about myself, my boys and how our brains work. It's given me drive to support others through sharing my story and bought me so much closer to my boys, now that I know we're all wired the same way.

My wife is amazing and a driving force behind the best decisions of my life. She gave me my bonus son, "M" (but if anyone asks, he's mine and it was quite rude if her to act like we hadn't conceived him together for 3 years before we met!) and my 4th son "F".

Anyway, a trait of adhd is telling super long stories and too much detail. Welcome to my life! 😅

#mightytogether

#anxiety

#depression

#adhd #autism #odd #ggd

No, this is not a miss-spelling! For every day is a battle; a combat between symptoms, treatments for them, side-effects of the treatments and subsequent treatments to alleviate the side-effects, leading to more side-effects and more treatments. And so it goes on and on…

Life is complex when you have “multiple complex needs”.

I am “Neurodivergent”. My neurodevelopmental psychiatrist would say I am Autistic and suffer from BipolarDisorder, Social Anxiety Disorder, Mild Delusional Disorder, borderline Intellect and all-round Emotional Dysregulation. Politically, I align with the Mad movement. (with a Capital M: a re-claimed term of empowerment for Neurodivergents like myself).

This is my first post. I plan to start a regular blog about my inner and outer life. I hope it is of help to people who may relate, to families that are doing their best to support and to health-care professionals in this Mind-Field.

I was born 16-weeks early at only 24-weeks gestation and weighed 600 grams (that’s a little over a pound for those of you who aren’t metric). This was 24 years ago. My first 5-months of life were spent intubated in a London UK Neonatal Intensive Care Unit. My prognosis was poor: a slim chance of survival and, if I survived, a life of significant health and developmental challenges. I was a feisty little micro-preemie and I made it. Early years were filled with survival issues. Developmental challenges followed closely behind. These were all lumped under the umbrella of “global developmental delay” through my childhood.

My mother and I are compiling a detailed account of experiencing and surviving these childhood years. For the purpose of this post, however, I will fast-forward to age 16.

I attended a Mainstream Inner-City High School in London and was part of the school’s so-called “nurture group” (this term couldn’t be further from the truth) for “challenged” students like myself. Under the guise of learning “life-skills” we met daily with our Special Needs Coordinator and took part in cookie-making. I was bullied in school. Desperate to make friends I did literally anything a peer asked me to do. I couldn’t recognize a social signal if it was illuminated in a football stadium! My Peers found great humour and entertainment value in seeing just how far I would go and I, willingly, complied with any of their requests regardless of consequences. After all, they said they’d be my friend if I …..

My diagnosis of Autism (then called Aspergers Syndrome) finally occurred when I broke the law following a request from my peers. I was set up and I didn’t understand this. My school’s senior management team was unsympathetic and I was at risk of expulsion at best and a criminal sentence at worst. My mother and family doctor insisted on a re-assessment of my “global developmental delay” so I went to weekly meetings with a neurodevelopmental psychology team and received the formal label of “Autism”. I carried the label like a trophy. At last I had something quantifiable; something people could understand; or at least something people believed they understood. It didn’t help the situation with my peers but it did help me to navigate a system of support.

I moved to Canada for grade 11 when I was 17 and attended a wonderful independent school that celebrated diversity and supported the individual learning needs of each student. I was lucky that my uncle provided my Mum and I with a new life and with this gift of personalized education. I thrived there. It was an Individual Education Plan school where every student’s unique way of navigating life was accommodated. My self confidence grew. I actually was able to enjoy, achieve and learn for the first time.

I attended a mainstream college in Ontario, studying Early Childhood Education. The Accessible Learning Department made my experience there exactly that. Considering on paper I have a low IQ, (“borderline” intelligence IQ of 72) I was on the Dean’s Honours List for three semesters.

Then life took a turn for the worst when I chose to go back to London to visit my father for three weeks. Childhood memories of paternal bullying and abusive behaviour flooded back as they were repeated. I returned to Canada with PTSD and my first “major depressive episode”. This was also my first occurrence of ‘dual diagnosis’. Although upset by my father’s disregard for me, I was initially relieved to return to my loving mother and my wonderful college. I thrived for a couple of weeks. Then I somehow managed to lose my Apple ID. It was irretrievable and I was inconsolable. I knew that I could create a new ID but I wanted the old one back. I obsessed about it. I tried to kill myself over it. I stayed for three months as an inpatient in the Mood and Anxiety Disorder unit of a psychiatric hospital. There I attempted suicide and I was sectioned under the Ontario mental health Act several times over. My psychiatrist in this particular unit was an expert in mood disorders but not in neurodivergence. The ‘autistic’ fixation, sensory overloads and melt-downs kicked in. I was considered challenging and non-compliant.

My condition worsened in the unit and I eventually was moved into a semi-independent living accommodation under the guise of “crisis intervention”.

This was ideal. I saw my mother whenever I wanted to and stayed with her a couple of days a week and I lived the rest of the time in my own apartment that provided assisted living: support where and when I needed it. I became a part of this community, joined the gym next door and, over the course of about 18 months I began to heal.

I returned to college and completed my programme in Early Childhood Education. I’ll never forget my graduation ceremony when the Dean whispered “I’m proud of you, Joel” as he handed me my diploma.

I planned to begin a graduate programme in supporting special educational needs across the lifespan. I had (and have) a wonderful girlfriend who was also part of my semi-independent living community and we began planning a future together. I turned 24.

Then disaster struck. I was moved to a new “high dependency needs” unit within my building, given only 2 weeks’ notice. Similar to many people in the autism spectrum, I require significant preparation for big changes. I tried to contest this move as did my mother. It was the very beginning of Covid social distancing and my mother and girlfriend were not allowed to see me. I moved from my own semi-independent apartment to a restricted space with 24/7 supervision. My key staff was well-versed in high-support-needs autism but not in mental health issues. I had my next depressive episode. I stayed isolated in my room for a couple of weeks. My staff were angry with this and I was accused of being non-compliant and having behavioural issues. Finally, I attempted suicide again. Our family doctor referred me to another psychiatrist: this time a neurodevelopmental specialist. He arranged that I return back to my mother’s place where I have been for the past 6 months. It is this doctor who has diagnosed me as being BipolarDisorder.

My Mum has been nothing short of amazing and I know that sometimes I don’t tell her this, but I always feel it. She stopped work and has dedicated herself to supporting my very tricky and long-winded healing process. I was put on anti-depressants that triggered mania resulting in 3 more lengthy hospital stays and several emergency visits. I have no recall of these but apparently, I called the police on my Mum, accusing her of trying to hurt me. (Which couldn’t be farther from reality. Big-time delusions happened).

I was then taken off anti-depressants and put on an anti-psychotic medication and had what’s termed a “paradoxical effect”: this medication triggered mania. I always thought that mania was supposed to be something ‘up’ and exciting. It isn’t. It’s full of very grumpy irritability and short temper. Hypo-mania gets me feeling agitated while full-blown mania, for me, is filled with scary delusions.

I was weaned off the meds and had two further anti-psychotic drugs introduced. These made me lucid again and no longer as angry and agitated. But they had a side-effect I had never heard of before: the dreaded “Akathisia”. You know the expression “ants in your pants”? This sums it up in a very understated way. With akathisia you can’t stay still, you can’t complete a thought let alone a sentence. You feel the need to keep moving but also a sense of fatigue as you are physically exhausted but mentally hyper. I didn’t sleep for more than 2-hours a night for a couple of months. And this was all a side-effect of my meds.

I was given an antidote to deal with this and help me sleep. It didn’t work. I was given a further two medications to deal with this awful side-effect. One of them had the “paradoxical” side effect of making me hyper again.

As I write, I am trying different doses of medications. I am getting better but, as my autism kicks in, it is sometimes difficult to see the big picture as I focus on the detail of the moment.

When I’m having a “good” couple of hours (by that I mean ‘mid-line’, neither depressed nor hypomanic) I believe I am ALWAYS like this and I attempt to do too much. When I’m angry I cannot see any way out and I have the autistic repetitive thoughts.

I am fortunate to have a wonderful psychiatrist who understands the dueling manifestation of a dual diagnosis. He tells me that my emotional regulation “is like a dysfunctional valve which cannot not stop the turbulence within in the fumed engine”. I may be autistic but I always like a good metaphor!

I am grateful to have this opportunity to write and share my story and my journey into healing my mind, a day at a time. I’m of the first generation of micro-preemies to make it to adulthood and I look forward to sharing my continued story with you.

#Autism #neurodivergence #Disability #Prematurity #BipolarDisorder #NeurodevelopmentalDisorders

If you have ever had to explain ASD to a child it is difficult. ASD is a very complex disorder. However, if your child has a sibling with ASD, a relative, a classmate, or a friend then it is important they have a clear understanding of how ASD might impact that person.

In this two-part podcast series, I have taken the well-known fairy tale of Goldilocks and the Three Bears and rewritten it with the character of Goldilocks as having ASD.

While every person with ASD has varying levels of severity and presentation, according to the Diagnostic and Statistical Manual (DSM-5) to receive a diagnosis of ASD a person must meet the following criteria:

Persistent deficits in social communication and social interaction across multiple contexts
Restricted, repetitive patterns of behavior, interests, activities
Symptoms must be present in the early developmental period
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
These deficits are not better explained by an intellectual disability or global developmental delay although these can be co-morbid conditions

For a more detailed description of each of these areas visit www.cdc.gov/ncbddd/autism/hcp-dsm.html

I took great detail in making sure as many of the characteristics and traits that someone with ASD might present from the DSM-5 are included to give a fairly thorough description written using a simple and familiar storyline.

To use the story, first listen to the introduction in Part 1 until you are told to Pause. Then switch over and listen to the story read aloud (Part 2). You will be able to download a copy of the story with notes and without.

There is also a free downloadable guide you can use after reading or listening to the story with children. The guide includes definitions, as well as descriptions of each of the characteristics Goldilocks exhibited and a place for the child to give suggestions in how they might help or interact with their ASD relative or peer.

Visit http://www.bigablities.com/goldilocks to find both episodes and to download the story as well as the discussion guide.

#GlobalDevelopmentalDelay

When you learn you are pregnant, in particular with your first, you get the books that tell you all about the upcoming pregnancy and the first few months of motherhood. You plan, work, scrap, save and nest all in an effort to create some semblance of order in eager anticipation of the impeding chaos of “new parent.” While all of the the uncertainty of being a new parent can be unsettling, there is some sense of comfort in knowing that others have done this same thing. In fact, often turning to those we deemed “more knowledge” for guidance when feelings of inadequacy sneak in to cloud one’s confidence.

So after several years as a small family of three we decided to expand. We knew we wanted to have one of each. Seems easy enough right? So, we became a family of four, expecting our experiences to be the same as all those other parents that had also decided to make their families larger. We did all the things we were supposed to. We had extra blood work and a noninvasive prenatal screening done to tell us our risks for congenital defects. We knew that I had a negative blood type so we took the rhogam shot when I began spotting early in the second trimester. I took prenatal vitamins and iron supplements. We thought that everything had an answer.

Quickly our lives were changing catapulting us into the “sandwich” generation. The indicators had begun several years prior as Sandy began to fall into poor health. Yet with that said, we didn’t recognize the severity of the situation. We continued to fight and find treatments that had been pursued by others with success. So Rich took on the role of managing his mother’s health and I stayed with Charlie in the hospital. While Charlie’s case of septicemia and hypothermia at six days old was challenging, difficult for our entire family, even that had a set protocol in place for the doctors and nurses follow. These scenarios all with prescriptive, predictable treatments that contained mantras of “moving forward.” It was as if everyone was following some intangible assembly manual that contained instructions on what to do next.

What isn’t written is how to recover, how to “move forward” when you are missing parts of your family. Or how to raise a child with global developmental delay, hypotonia, a variant of uncertain significance, oral motor dysphasia and mixed expressive receptive language disorder. There is no set therapeutic regimen to follow, no guide manual or picture instructions on how to take care of your parents while caring for your child. It is some assembly required with this atypical sandwich generation family.

As we “move forward” it is impossible not to look back with regret. Impossible not to compare our child to others. Or wonder what the future holds for the family we have that remains. I am just winging it, making it up as I go. Trying to put together a plan for my family with huge pieces of the puzzle missing and no box with a picture at which to look. My efforts are drawn out. They are disparate, scattered because there are so many irons in the fire, so many therapies to do, always someone needing help.

My family isn’t typical, nor are our experiences. My son is disabled, so is my mother. Each day we move forward with a plan in mind only to change direction, bending and flexing because a location isn’t accessible, or lacks an adult sized changing space. So I change my son on dirty bathroom floors, on the ground in public spaces or my car because I have no other option. I pack a cooler for mashed and pureed food carrying it everywhere because Charlie can’t eat off a menu like other kids do.

No, my family, our life, it isn’t typical. We are a “some assembly required” family. Yet, while we don’t have any instruction manual, our diffused efforts are paying off. While sandwiched, caring for multiple generations both Charlie and mom are learning to walk. And when I am curled up next to my daughter in her bed, I know we are doing something right as she shares her deepest fears so we can role play helping control her anxiety. It is as Charlie bunny hops over to me, pulling to stand independently that I realize my sandwiched family is writing our own assembly manual and it is okay if it takes a little extra time because there isn’t a guidebook on how to do this.