Welcome our guest Kristina to LKFOA!!
I have known Kristina and her children for several years. When I embarked on this mission to bring together individuals to discuss not only Special Education but ASDs, I instantly thought of her. Kristina is a married mother of three, a ten-year-old and three-year-old daughters and her nine-year old son. He is diagnosed with classic autism. “He’s considered nonverbal, although he has a few words and uses verbal approximations and modified sign language to communicate.” mom writes. Like most families with children on the spectrum, Kristina writes that Autism affects every decision they make and it affects everything “from our relationships with each other, to our finances, to our plans for the future.” She and I know too well that when you think about raising a child or children on the Spectrum, you have to think about everything from living with your child from the age of 21 forward when school is over, home modifications if needed, and retirement and if it will ever happen for you.
Like many parents, she did not know much about autism before her son’s diagnosis. “There hadn’t been any history of autism in my family prior to my son’s birth, and I didn’t have any personal experience interacting with people with autism.” Like many of us when we heard the diagnosis, you instantly think of Rainman and Kristina is not any different. “…, I had that impression of Dustin Hoffman’s character in the back of my mind as being representative of someone with autism.” She thought as I thought that all people with autism were sensory avoiders and didn’t like affection. Her son like my son loves hugs, he’s a sensory seeker, and loves hugs. Like many of us that are touched by the disorder, we have found that each child is different and “have their own personalities and idiosyncrasies just like anyone else. As the saying goes, if you’ve met one person with autism, you’ve met one person with autism.”
When her son was diagnosed, Kristina feels that she received accurate information from her son’s medical team. She was already seeking speech therapy and occupational therapy services for her son both privately and in school, but she was encouraged to seek out Applied Behavior Analysis(ABA) therapy. This year is her son’s third full year he’ has received ABA through South Carolina’s Pervasive Developmental Delay (PDD) Waiver and he like my child will no longer receive ABA after this month unless her family can figure out a way to pay for it. Kristina writes “…, and I’d recommend it to any parent with a new-diagnosed child.”
Like many parents, which I can relate to this, friends come and go. Kristina feels that it’s not that you lose friends, but “…no longer being able to relate to them, or vice versa, because of the challenges inherent in having a child on the spectrum, especially on the more sever end of it.” Things that we take for granted as being simple can turn into a difficult task given when our children are involved. Kristina admits that due to the chances of a “public scene due to a meltdown” there was a period that lasted for years where she felt as though she was trapped in her own home. “…going out with him was so much work, and I feared the possibility of those public meltdowns.” For her child and for mom, things have improved as he has gotten older and mom credits the therapy that he has received. As we all know, autism does not go away and her biggest fear is the possibility of him wandering away one day.
Kristina’s hope for her son is that he one day will be able to carry out his own personal hygiene and acquire self-help skills so that he can be a “contributing member of the household.” She knows and understands that he will never be able to live on his own but hopes that he will get used to change so that he can go on outings without getting upset that plans change. She wants him to be a self-reliant as possible because he may one day have to rely on strangers for his care and like many parents she is terrified about this. In terms of advice for parents with new diagnosis, “I’d advise a parent to make sure their child receives Early Intervention Services, through an agency such as Easter Seals, so that their child’s development can be monitored.” She also succeed that if you are in the State of South Carolina, to contact the Department of Disabilities and Special Needs “inquire whether there are any waiting lists for waivers or other programs that their child should be placed on.”
Like many parents, she has fantasized about a cure many times. She feels like some experts believe “that autism is caused by a combination of genetic susceptibility and environmental trigger(s), but what genes are involved and what those triggers might be remain a very great mystery.” We both hope that in our lifetime a cause and cure may be found for future generations. In closing, Kristina would like for you to know that “My son has severe/classic autism, but he is affectionate and loving and in so many ways a joy to behold. Everyone who really gets to know him ends up loving him. He’s a sweet, good-natured boy, and I’m so proud of the progress he’s made and continues to make. Each year he can do more than he could the previous year, and every one of his accomplishments, no matter how seemingly minor, is a victory for him and, therefore, worthy of the greets celebration.” I agree Kristina because some progress is always better than no progress.