Having a baby is a life changing experience.
In the beginning its very physical. Sleepless nights changing the baby, feeding the baby, burping the baby. But then the baby grows and develops eye contact, responds when you call their name, starts to imitate a wave bye-bye, begins to babble. Very early on, the baby develops sounds, approximations of words and then words that melt your heart.
As the baby develops and grows they give back and life becomes easier, simpler, less strenuous. With every skill the baby learns, they able to become more independent.
For some babies, there is an environmental trigger and genetic expression that interrupts development. The baby either never develops skills in the first place or stops developing and looses previously acquired skills.
What comes next is a ‘diagnosis’ of autism and then the part Im still coming to terms with after all these years.
Accept what? ……,Accept that all the hopes and dreams for my child’s future are shattered. Accept that my child wont speak or go to normal school. Accept that my child will be lost in his own world and Ill be a caregiver not a parent for the rest of my life because ‘surprise’ your child has autism and they just ‘neuro-diverse’ and you should just accept it.
Pause for just a moment and ask yourself if you truly willing to accept this or if you willing to standby and watch that normal baby you brought home from the hospital slip away? Its ludicrous to suggest to any parent that their child simply has ‘autism’. Over night the child looses previously acquired skills but its simply labelled ‘childhood autism’. Go home and make your child comfortable. Is this for real?
Unfortunately, we’re living in a world where acceptance culture is the order of the day and this ideology has spread its tentacles to autism. It makes me very worried about the future for many families raising children with autism as the rate of autism steadily climbs.
A redefinition and reclassification of the spectrum is urgent! I can’t understand how one more day can go by without this redefinition. Autism is not a gift. Raising my profoundly autistic 20 year old who seizes ain’t no gift! I continue to search for his cure! Im never free not even when he wakes me at 5 am with his ipad to repetitively ask me questions because his anxiety is through the roof. How can I sugar coat this. Why should I?
Only I speak for my experience as a caregiver to my profoundly autistic son who is non-verbal. I clean the vomit and hold him when he turns blue from a seizure. I lie awake at night worrying about his future and therefore only I can speak for my experience with his autism. He cant be represented by others with a diagnosis or a completely different experience. Nor can they speak for me or represent my experience with autism. I have been bullied and slammed for my honesty.
Its been many years with autism in my life. Autism came knocking on my door twice. My youngest son was also diagnosed with autism. Thank goodness he recovered from autism. Yes RECOVERED! We’re blessed to experience him completely and entirely. Autism didnt rob us second time round. We beat autism! If you wondering how? 7 hours a day of ABA for 4 years and lots of biomedical intervention to heal him. I documented our journey in my book. Saving my Sons- A Journey with autism.
Where are the doctors, scientists, immunologists, paediatricians, physicians, toxicologists and medical professionals searching for a cure for autism. Instead we read articles like “moving away from an autism cure”. Of my word! Pinch me – this has to be a nightmare I’ll soon wake up from! Where are the doctors? WHERE ARE THEY? Our children are suffering. They in pain – thats why they banging their head and smearing their faeces on the wall.
Are we moving away from finding a cure for cancer or diabetes? So why must we move away from finding a cure for autism to prevent a life sentence of suffering.
Ive watched the diagnosis of autism play out across the spectrum over many years. And Im here to tell you that left untreated it can be a journey of hardship, pain and suffering for both the parents and the child.
Ive climbed the highest mountains and searched the deepest oceans for treatments to secure David’s quality of life. And I will continue to do so. Do I hope and pray for a cure? Everyday!
I call on every medical professional and professional working in the field of autism to discard your bias and what you thought you knew about autism. Autism is not simply a psychiatric condition requiring psychiatric medication.
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