Additional Needs

Special needs parenting: A new diagnosis…

Posted by Rebecca Toal on 26th May 2021 Additional Needs, Advice & Support, Disabilities

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Have you ever been in the situation as a special needs parent, where you suspect your child has a certain condition, but you are kinda dreading getting it investigated or getting it formally diagnosed?

I know I’ve personally been in that position a number of times over the last 10 years…

My little (or not so little now) girl Brielle was born extremely prematurely at just 25 weeks and 3 days gestation.

She weighed a grand total of 801 grams (1lb 13 oz)- less than a 2lb bag of sugar!

This put her in the ELBW category (which no, does not have anything to do with an elbow as it sounds! It stands for extremely low birth weight) and meant she was VERY very sick and fragile.

She spent over 6 months in the NICU and underwent many surgeries and treatments, it was really touch and go if she would survive, and was definitely the hardest time of my life.

Fast forward 10 years and my miracle baby Brielle is thriving and growing taller and stronger by the day.

She is almost TOO strong now sometimes for us to manage as she cannot walk independently and is SO strong willed she often pulls us the opposite direction we need to go, or jumps up on us like a baby koala to be carried.

Her 1:1 asked me recently what was I feeding her because she’s so flipping strong! (I replied, spinach like pop-eye of course.)

Which is true… I make her PEG-feed blends as she’s on a blended enteral diet and does so well on it).

Yesterday when I brought her to school, she dropped to the floor just as we got in the first set of doors.

When her 1:1 and I struggled to get her back on her feet, she wedged herself between the door and wall, not wanting to go to her classroom.

She is getting very stubborn and moody these days…She is having more and more meltdowns, and getting very fussy if things do not go her way, or her routine is disrupted.

I finally got to speak to her Pediatrician yesterday and expressed my concerns over her change in mood and behaviours over this past year.

I’m seeing many traits of ASD and that is my suspected new diagnosis.

She can get so worked up and upset that she hurts herself by thrashing, kicking, banging her head against things or hitting herself, biting her hands and arms, throwing herself around.

I’ve had to collect her from school 4 times in the last few months as they just could not get her settled and she was an absolute state.

I know it will be really hard to assess or diagnose for ASD because Brielle is also mostly blind, and she is profoundly deaf with bilateral cochlear implants.

She cannot speak due to her deafness though she communicates in sign languages and gestures.

Thankfully there seems to be a local specialist psychiatrist who has much experience with children who are deaf and those with learning disabilities so plan to get referred to her.

We just want the best for our precious girl and to know how to support and communicate with her in a way that nurtures growth and independence.

Isn’t that what we all want?