It was during a trip to Target when Madeline Jones knew.
She had suspected for some time — at first it was little things. Noises hurt her daughter, Madison’s ears and the sound of the shower water would send her into intense screaming fits. Madeline and her husband Luke even had to sing happy birthday in a whisper.
But it was watching Madison flap her hands and place them over her ears that she knew her daughter was autistic.
“By this time, I had already started to do research and when I saw that, I immediately pulled up ‘signs of autism’ on my phone and showed it to my husband. He said ‘do you really think she’s autistic?’ And I said, ‘I really do.’”
Madeline, the Founder and Editor-In-Chief of the successful Plus Model Magazine, turned to a new pediatrician and after a month of testing, the doctor confirmed Madeline’s suspicions: Madison had autism. It was one of the most devastating days of Madeline and Luke’s life.
Despite the initial devastation of the diagnosis, Madeline and Luke immediately sprung into action. They researched classes and support groups for parents and therapy for Madison. They were able to secure a spot in a special needs preschool that helped Madison learn to say her first words at three years old and eventually become potty trained.
All of the sacrifices and life adjustments took a toll on Madeline and her relationships with her family and Luke.
“I was kind of MIA for a couple of years with my family because she didn’t want to be around a lot of people. We come from a big family so when we would want to go to my mom’s house and everyone was there, we would not be there because she couldn’t take going to Chuck E. Cheese’s or going to a big birthday party. She would throw herself on the floor or she wouldn’t go in.”
The constant anxiety of worrying about Madison’s needs affected her marriage and Madeline and Luke had to rededicate themselves to each other to keep their familial unit intact.
“It took us a long time to get there. When your child is suffering and you’re in a constant state of fear and anxiety, it’s hard to feel sexual or romantic. In order for us to reconnect, we had to make a conscious decision to get back into our place. I had to put our date nights on the calendar. We had to realize that we deserve time for each other.”
It was with the Board of Education where Madeline would face one of her toughest battles.
After attending an amazing preschool for special needs, Madeline discovered the public school in New York City was ill-equipped to handle Madison’s specific needs. She had them agree through the Board of Education to obtain paraprofessionals at Madison’s school to be properly trained to work with kids on the spectrum. It even led to a tense stand-off with two men in the education field attempting to intimidate her.
But the overcrowded environment wasn’t working for Madison. The Board of Education eventually agreed to pay for Madison to go a school for her special needs. After visiting several schools, Madeline discovered a great school for Madison in the neighboring town of Nyack, NY.
Jones knows the difficulty of raising a special needs child and offers this advice to new parents of autistic children, “Allow yourself to feel what you’re feeling, which is going to be a little bit of everything from anguish to fear of the unknown. But take those feelings and be proactive. Be ready to make sacrifices to connect with your child. Never, ever, ever limit your child because the doctors may say ‘he/she will never [do something]’ but no one has the final decision except God. “
Throughout this journey with autism, Jones persevered for Madison and it was all worth it. While holding hands with her parents on walk through the city, Madison expressed the love she felt from her parents in four meaningful words, “We are a family.”
‘We Are Family:’ A Mom’s Fight To Making A Better World For Her Autistic Daughter was originally published on hellobeautiful.com