Life as a Mum to a special needs child- Mel's Story

Hi  I'm Mel from http://www.drivingmissmummycrazy.com/
 I've been asked to write a little splice of my life so you can see that there are lots of different types of special families out there!!! So here is a little bit about why we are here right now. I turned the big 3-0 last year. My mini mid-life crisis as such. Found myself a single mum to Mr 5 - Affectionately known as Boogie. Anyway... Boogie has a whole mess of health problems.

After a tumultuous pregnancy with no answers as to why, Boogie was born 4 weeks 6 days premature. Weighing in at 1.067kg it was the beginning of his daily struggle that is now his everyday life and the endless questions that we still have unanswered.

Not able to sit unaided until 12 months old and not even attempting to pull himself up on furniture until 18 months, I knew something was wrong. All that was missing was the answers to our question. Why?

He suffered his first major Asthma attack the night of his first birthday party, and from then the problems just got worse, suffering pneumonia, spending weeks on end in hospital with his under-developed lung problems, even catching swine flu during the epidemic. Something as simple as having the flu injection meant he was monitored in hospital to make sure of no complications. Several ICU admissions later and countless food diaries pointing to food allergies, our result was a bucket load of steroid medications which may or may not stunt his growth but manage to keep him alive and out of ICU a majority of the time. So we take that as the good and the bad

He started cutting teeth which bought with it countless febrile convulsions and hospital stays every time his temperature soared. Watching him be held down by student doctors instead of them administering anything to stop the fitting meant he had prolonged fits, causing more damage to his already fragile body. He was then diagnosed with a Thalassemia beta minor blood trait & iron deficient Anaemia (hereditary that were both from me personally) it was just one more blow to his already complicated conditions.

But I knew in my stomach that even with all those diagnosis there was something that was still not quite right. At the age of 2 we were taken under the wing of his AMAZING paediatrician. With the introduction of Mr Amazing came our most complicated condition of all. Spastic Diplegia Cerebral Palsy & only this year at the age of 5: Sensory Processing Disorder. Finally my answer as to why he couldn't reach any milestones and the cause of his developmental delay. It was a relief to be honest. Someone finally telling me it wasn't all in my head.. Instead of every single health nurse, Doctor & Therapist telling me it was in my head we were finally validated.
He is a victim of his own brain and fear in which he can't put certain things in his mouth without gagging and throwing them up!!! This is not bad parenting on my part ... It is misdiagnosis on the part of some of our earlier practitioners and the practises implemented during his treatments.

With that diagnosis has brought daily physio at home, and expensive private sessions a fair distance from our home. Sensory Integration Therapy, Speech therapy, Occupational therapy, Bike riding therapy, Botox therapy (multiple injections under General Anaesthetic in his legs to loosen muscles so he can stand & his arm so he can attempt to use his left side), Dieticians, a feeding team and countless moderations to our home all of which have been hard to fund, for something soo basic, and yet soo necessary. Everyday is a struggle to maintain his weight, getting him to eat with his sensory issues, spitting, gagging and overall not eating more so when he is sick.

We have daily meltdowns for every reason under the sun, but not every meltdown is Sensory related ... We have normal 5 year old melt downs too!!! Where he pushes and pushes and PUSHES until I myself have a mini meltdown of my very own... But my meltdowns ... tired, stressed, emotional ones anyway seem to be occurring more and more. The more I push him ... the more I feel guilty, the guilt brings tears ... and today as I write this I am bawling my eyes out.. I LONG to feel normal again ... to have no worries ... no guilt ... To be HAPPY ... not that I am not happy ... But I remember what carefree is ... and I wish he could know that kind of normal too!!!

All of this without being able to return to work, is starting to take its toll on us (Boogie and I) financially, emotionally and mentally. All I want is for him to be able to have some sort of normality , even though we aren't really sure what that is any more, and for me to be able to be at his side smothering him with kisses through it all. What is normal in those eyes anyway?! In his eyes ... I long to know!!    


                                   In the NICU at 7 days old ... weighing only 1085grams

                                       Tonsil complications.....the year he nearly died :(

                                         Not a fan of kisses- part of his sensory aversions.

                                              The smile that makes it all worthwhile!