special needs child

‘I kept asking, ‘Is my baby okay? Why has no one updated me yet?’ I don’t want to touch him. I don’t want to even look at him.’: Baby born with Cornelia de Lange Syndrome, ‘They avoid us like the plague’

“‘Termination should be strongly considered,’ was rubbed into my face. For 2 weeks after his birth, no one but myself and my husband were allowed to see Preston due to isolation. Our 2-year-old daughter wasn’t allowed to meet her new little brother. I didn’t ever go a day without having hope.”

‘It’s probably just fluid in his ears.’ He had a huge patch of white hair and wasn’t reacting to sounds. ‘I hear Mila Kunis has it too.’: Woman gives birth to son with Waardenburg syndrome, ‘All I see is my perfect baby’

“Over the course of 9 months, it never once occurred to us there could be something wrong. The day before we left the hospital, a nurse casually mentioned, ‘Cooper hasn’t passed his mandatory newborn screening.’ I did a little research. By the time we got the diagnosis, I already knew.”

‘Mama, this is the guy from the airplane I made friends with!’ She called Greg her BFF. Only 4 months later, she was dead.’: Mom wants others to know the impact of ‘difference makers’ after daughter dies from heart surgery

“Our precious Amie was approaching her next open heart surgery. ’Wanna play hooky from school?’ She excitedly said, ‘Yes!’ I secretly handed the next note to one of the most amazing difference-makers ever. He wanted to introduce the ‘celebrity’ on board. The look on her face was beyond amazing. This would be the last adventure we would ever be able to take together.”

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

“When she was 2, she didn’t talk. She said one word, ‘Hi,’ over and over. I was worried, but most agreed it was so cute. At 4, she stuffed food in her mouth messily. Gosh, it was cute. At 6, she was diagnosed. Everyone agreed she was still cute, but followed with smiles of pity. Now, she’s 11. She picks her nose, sits with her legs wide open. She has body odor, speech delays, and drools. What happens to my girl when society decides it’s not ‘cute’ anymore?”

‘All they see is ‘locked in his room’ and immediately jump to ‘savior’ mode.’They call CPS without knowing the damage it can do.’: Mom of bipolar, autistic son advocates for mental health, ‘Each victory makes us stronger’

“He has been up till 2:00 a.m. every night the past four nights. I can see the exhaustion in his eyes, but his brain is on rapid-fire mode. I feel like a horrible mom sitting on the floor in the hall outside his room, which is locked, listening to him.”

‘Is this normal?’ My husband watched me jump into that black hole in an effort to pull her out.’: Woman tells how autism affected her marriage, ‘I could only see what was visible in my autism-centered world’

“She withdrew into her own world. I would stand right in front of her, screaming her name. She didn’t even acknowledge I was there. The doctors called it autism. It was still up to me to figure out how to make it better. I pushed everyone away, including my husband. A mother is only as well as her sickest child.”

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