ABA THERAPY AS A BLESSING

Giselle Romanino has worked long and hard to support her son Jacob in his journey with autism. He was diagnosed with a developmental delay when he wasn’t meeting his milestones as an infant and finally diagnosed with autism at the age of five.

“The diagnosis was bittersweet,” Giselle laughs. “I was still in denial when I got the diagnosis. It was hard to deal with it because I didn’t know what to do.”

When Jacob went into the school system, Giselle was told he would have some access to ABA therapy, but that never materialized. Jacob went onto a wait list for almost two years to receive the services. 

“When he actually started to receive ABA when he was seven years of age, it did wonders for him,” recalls Giselle. “Jacob needed that. He needed the processes and the repetition. And I needed the help from someone showing me how it needed to be taught to Jacob because he wasn’t picking it up, so it was crucial. 

“The only thing is I was very disappointed that there were so many gaps in the services, that at 19 years of age, he is learning to wash his hands now, tie his shoes, and toileting. So, it’s a little frustrating. I wish he could have had better access all the way along instead of all the gaps in services.”

Giselle points to her son as a prime example of a child who fell through the cracks. She attributes this to complex funding programs that deprived Jacob of consistent therapy. While she appreciates the way ABA approaches skill development, the simple fact of the matter is the family could never afford any privately funded therapy on their own. 

“At nine years, I guess it was in Grade 3, he was going to school full-time, and I couldn’t afford to do therapy,” explains Giselle. “It was just two years ago before the pandemic started that Jacob was able to get ABA therapy in the home, so I had people coming into the home but, it was like only an hour and half of therapy. He didn’t get very much, but now he’s getting quite a bit because we were a part of the core services, but now Jacob has aged out of that so funding will be done in July. And then we won’t see therapy because I cannot afford therapy.”

Giselle describes ABA therapy as a blessing. 

“It has been a godsend,” she says. “He feels so much more confident in his own body and he feels confident in himself that he can do things. ‘I can dry my hands. I know the steps to put a dish away.’ Little things like that – everything was done for him, so it was exhausting as a parent, but I’m sure it was also frustrating for him because he could do things, but he wasn’t taught properly how to do it. ABA broke the steps down for him to achieve small, but important goals.”

Giselle lights up when asked to describe Jacob.

“Describe Jacob? He’s just very lovable!  He’s happy-go-lucky. He brings a smile to everyone’s face. He’s just so genuine. I kind of live my life every day in his eyes, in just being that pure soul. He’s just a pure soul even though he cannot speak. He lights up the room when he walks in it.”

Giselle laments the fact that she and her ex-husband could not do more for Jacob. 

“Like I said, everything needs to be taught to Jacob and still needs to be taught to Jacob,” she explains. “Now that I have the ABA services, he is learning daily living skills. He is learning to wash his hands. He is learning to put on his shoes, put on his shirt. Before that point, I was doing everything for him including changing his diapers. It was quite overwhelming, and it still is, but I can see that he has the ability to do it, but I’m not a trained therapist.” 

Jacob is currently expressing himself through a communication device and Giselle, once again, credits the ABA therapy for allowing him to learn things she never thought possible.

“The toileting routine and being successful and almost out of diapers,” she smiles. “Oh my god, I never thought that would happen. I actually have chills thinking that they may be a possibility in our near future.”

With respect to the future, Giselle says Jacob will be able to go to school until he is 21. Currently, they’re also working with a behaviourial therapist on the Toronto Catholic District School Board following Jacob’s case.

“I don’t really know what to expect for Jacob’s future,” she says. “I’m just going to continue what I’m doing and there will be some sort of resources in the future to be able to continue some sort of ABA therapy because he truly needs that to live a somewhat independent life. I know he won’t be fully independent, but the hope is that he will have that dignity to be able to live. He will be going to a day program when he is 21. We’ve already established that, but really work on these life goals and daily living goals to make life just a little bit easier for him. I just want Jacob to reach his full potential whatever that looks like.”

Giselle has even thought about what life will be like for Jacob when she passes.

“I have everything put in place in regards to my will and a trust, how everything is going to be funded,” she explains. “The home that we live in right now will be Jacob’s residence with support.  And it’s just a matter of figuring out how much support I can obtain and how much funds I have available. Yes, I’ve thought long and hard about it. ”

Giselle acknowledges it has been a difficult road but says for Jacob, it has been worth it.