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Madeline

Updated: May 14

Madeleine is our rainbow baby following a 2nd trimester missed miscarriage. So, it is safe

to say that my anxiety was heightened throughout this pregnancy. I suffered from extreme

insomnia that resulted in hospitalization following a fall where my body literally collapsed from not sleeping for so many days in a row. I was hospitalized a second time in my third trimester

due to massive kidney stones that required surgical removal. I also had preeclampsia which

lead to an induced labor due to continuous unsafe blood pressure levels. After being induced I was sent home but returned 5 hours later to labor and delivery at 10cm dilated. Due to an incredibly short labor, Madeleines lungs needed to be cleared by the NICU following delivery, but she was otherwise healthy. We remained in mother baby unit for 5 days after Madeleine lost 13% of her body weight and had jaundice. During this time and for the next 30 days, she was finger fed through tubes and syringes.


Once Madeleine was able to nurse and bottle feed, she finally began to gain weight.

However, she started to randomly and seemingly out of nowhere hysterically scream for hours

on end. She would be happy playing 1 second and with a blink of an eye she flipped to

hyperventilating, convulsing, and screaming in agony for upwards of 12 hours a day. She was

unable to sleep longer than 37 minutes at a time due to constantly waking up screaming

hysterically. Her hysteria was communicating to me that she was in extreme distress and pain,

so we went to her doctor. She checked out healthy by her doctor and we were sent home, but

her pain and agony did not go away. I tried everything I could think of to help her. We saw a

chiropractor, an osteopath, a massage therapist, and an occupational therapist. I tried an

elimination diet where I cut out dairy and other common allergy foods, to determine if

breastmilk was causing her any potential allergies that may be resulting in this discomfort.

Despite my best efforts, nothing changed, and Madeleine continued to live in pain day after

day. We saw multiple doctors and 2 pediatricians, yet not one of them would investigate why

this was happening, I just continued to be dismissed. A few months later at 4 months old, blood

became apparent in Madeleine’s diapers. I immediately scooped her up and went to a walk-in

clinic from which we were sent for an urgent ultrasound. The next day, I received a call from

the walk-in doctor requesting that I come to her office to hear the results of the ultrasound.

The doctor told me that there appeared to be a large 3 by 5 cm growth that was possibly a

tumor pushing on her adrenal gland, as well as other smaller growths on her kidneys and

ovaries. She requested an MRI to have clear, detailed images of the area. Unfortunately, 3

months later we still did not have the MRI. Luckily, our newest pediatrician personally went and

put her name on the top of the list, resulting in Madeleine finally receiving her MRI one week

later.


When we received the results from the blood work and MRI we were extremely grateful

to know that she didn’t have cancer as they had originally suspected. She did however have

massive cysts on her adrenal gland, kidney, and ovaries. In the months that followed,

Madeleine was in excruciating pain as her largest cyst, 3 by 5 cm in size, burst inside her. Her

other cysts remained and were monitored by ultrasounds for 2 years. Madeleine does continue

to sometimes have pain and flare ups, where the pressure from the cysts affects her body’s

ability to know if she really needs to go to the bathroom. This has resulted in her running to the

bathroom hundreds of times a day convinced that she needed to go when in fact it was just the

pressure from the cysts in her body. There is also a very high likelihood of her having PCOS and

endometriosis.


After receiving this explanation when she was 7 months old, I convinced myself that this

was the reason for any struggle or challenge that she had been having. At 2.5 years old, when

the world shut down due to a global pandemic, Madeleine was removed from all social

opportunities that toddlers pre pandemic experienced. She was thriving at home 1 on 1,

however, when the world started to open up again 6 months later, everything began to change.

My little chatterbox who could speak in 5+ word sentences at 18 months old and who had

memorized and could read dozens of children’s books before the age of 2, was suddenly mute

in social situations. I was caught off guard when preschool and her pediatrician questioned her

ability to speak, because from our experience, memory and language had always been her

strengths. As social demands continued to increase in pre-k, dance class and kindergarten the

following year, so did her debilitating anxiety and behaviors. Why was my inquisitive, curious

child who thrived learning at home with me over the pandemic now struggling so immensely?

She would have panic attacks and breakdowns about the mere thought of putting on tights to

go to dance class. She would run away screaming and require two adults to get her into the car

to go to school. She had lost all her flare and zest for life. She was no longer sleeping, as she

could not stop the intrusive thoughts in her mind. She was constantly scared to say or do the

wrong thing in social situations, thinking that it would result in nobody liking her. She had lost

all self-esteem and confidence in herself and no longer thought that she was worthy. She was

miserable constantly and it was a clear indication that something was not right.


We took her to her family doctor and pediatrician who thought nothing of it as she was

physically healthy. We spoke to the school who was not overly concerned either because

academically she was doing fine. We privately sought out a speech and language pathologist to

have her receptive language checked as well as an audiologist to see if hearing, language, or

processing was making things difficult for her and consequently resulting in these new

behaviors and challenges. Yet again, everything checked out fine. So, I self-referred Madeleine

to Child and Youth services in Regina to seek out a psychological assessment hoping to find out

what was going on. In my heart, despite what anyone said, I knew that things were different for

Madeleine and they always had been. It was clear to me that social, emotional and

communication demands, and expectations were now surpassing Madeleines current abilities.


One month later, Madeleine’s 15-month-old brother was diagnosed with autism

spectrum disorder. Madeleine did not present like her brother, so autism had never even

entered my mind as a possibility for her. We were always dismissed and told that she is just an

anxious child. I began researching autism and how it can present in girls. I spoke with the global

autistic community about their experiences, particularly women that were diagnosed later in

life after being miss diagnosed or missed altogether. I started to look closely at the DSM-5

diagnostic criteria and really digging deep to think about the last 5 years of my child’s life. It

was clear to me that Madeleine was autistic. I called child and youth to update them on her

little brother’s diagnosis and how I really think she needs an autism assessment. Having an

autistic brother meant the likelihood of her being autistic was much higher as well, so I thought

they would see the need. Child and Youth intake refused however to even put her on the

waitlist after a 10-minute stereotypical phone questionnaire that determined an assessment for

anxiety is all that was warranted. Now there is no doubt that Madeleine displays extreme

debilitating anxiety, but what is the root cause for the anxiety? I whole heartedly believed there

was more going on and even though no one would listen to me, I continued to pursue answers

to these questions.


We were able to see a private doctoral clinical psychologist 2 months later who

diagnosed Madeleine with 100% certainty as autistic. The guilt of missing this piece for 5 years

ate me alive. All of the signs had been right in front of me the whole time, I just let her medical

diagnosis and Covid take the blame for the social, emotional, communication and behavioral

struggles that she was having. I was now determined to ensure that she receive any necessary

support to help her thrive in a neurotypical society while continuing to be authentically herself.

Unfortunately, in Saskatchewan, invisible disabilities are largely misunderstood, and you very

quickly become marginalized and restricted from all support programs that exist in this

province. You should not have to fight and advocate every single day to have your disability

recognized and receive adequate support to help you thrive, but sadly that is the case in Regina

and across the province.


It has been just over a year since Madeleine was diagnosed autistic and a lot has

changed over the last 15 months. Madeleine has changed school divisions and is now able to

access some accommodations and support at school. We also have a private neuro-affirming

support team that is helping Madeleine to see her value in this world and to equip her with the

necessary skills and tools to maximize her full potential and to utilize her strengths. Madeleine

has worked so hard to understand her brain, her sensory profile, and herself. She is a loving,

caring, nurturing and extremely empathetic little girl. She loves books, dolls, drawing, coloring,

and crafting. She has so many incredible gifts to offer the world and I will do everything in my

power to continue to support her in achieving her dreams. I will continue to spend every ounce

of strength that I have to advocate for more support, acceptance, and inclusion in a neuro-

affirming community. My hope is that she will one day live in a world where people are not

discriminated against for being different or for not conforming to neurotypical norms. She is

different, not less, and she deserves the same respect, dignity, and support as any other child. I

will continue to advocate until that becomes a reality for Madeleine and so many other children

in this province.



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