Alina Magdalena Pilipionek's multicultural family is based in Germany, and her son Achilles is on the autism spectrum. Through her blog, Autism Cookbook, she shows the "flavours of the spectrum," while providing a resourceful, behind-the-scenes perspective on using Applied Behavior Analysis and Verbal Behavior (ABA/VB) therapy.
Tell us about yourself and your son, Achilles.
Buondi! My name is Alina. I'm 35 years old. My older son Achilles is five and he is on the spectrum. We are incredibly similar and sooo different in the same time. I am determinate. He is stubborn. I like quiet. He is like a tornado. I am his mom. He is my superhero. Achilles is creativity in essence. He is brilliant, and sometimes we do not even catch it. He loves astrophysics and everything about planets, solar system and cosmos. He is a great singer and pasta eater. Always smiling and ready for serving some fresh joke — he's the inventor and soul of company.
We are from different generations. At his age, I enjoyed playing with two sticks in a backyard and he — 30 years later — is asking for an iPad because he needs to check the daily planets' position on his sky guide app. So yes, generally it's way complicated to raise a kid in our time in my opinion. Especially with all this interesting tech stuff and everything quite available. Plus, in our case, all of this could be a messy distractor or a perfect motivator.
We are a multicultural family — a mix of Nord, East, South and Central Europe currently living in Germany. Every each of us was born in a different country and has different mother tongue. I am Pole, my husband, Mida, is from Milan. Both of my kids were born in Düsseldorf, here in Germany. We use Italian language at home for general communication, and English is the language of Achilles' therapy, and German is the language Achilles is learning in the kindergarten — just to complicate already not easy situation.
I'm currently a proud stay-at-home Mom (SAHM), working on my personal blog about how exciting and challenging is raising a kid on the autism spectrum. Since May, I'm a mother of two. And that moment was the greatest exam and "upgrade to the next level." We were overflowing with fear, uncertainties, and "What should we do?! How should we manage the situation!?" But everything was already planned and we started the preparation for the new arrival much earlier before even thinking to have another child. We were already searching for help and learning about which therapy is the best to approach to all the struggles that impact not only the individual with ASD, but also the whole family as well.
What was the journey of Achilles' autism diagnosis?
To be honest, at the beginning I denied seeing what my husband was seeing. He has some experience with kids with different kind of disabilities, including autism, so he detected some "strange anomalies" in Achilles' behaviour and the alarm in his head started to ring. We were calling him with his name — he was not responding, and not even looking at us as a response. He was not interested in playing with his peers. He was very sensitive to certain noises and making strange noises over and over. Constantly tiptoeing. Not imitating, not pointing. And he bursted in a crying session due to frustration. He was engaging in a play that we couldn't understand, like quickly browsing through books without giving any attention what's inside. He could lay on the floor for hours if he was not engaged in some other stimulating activity. He was present with his body, but completely on the other side of the rainbow with his mind. Dreaming. We are still calling him "little dreamer" because sometimes he stops, stares into space and thinks for a few seconds.
We started with hearing tests, neuropediatric visits...It was a loooong and annoying process, especially for Achilles. When we got the written diagnosis, we already made one by ourselves. And both were the same. Autism. Not severe, but his non-verbal state at age 3 aggravated the diagnosis.
It's fantastic how your blog, Autism Cookbook, shows "flavours of the spectrum," with a variety of colourful experiences and perspectives about your son's autism spectrum disorder. How did Autism Cookbook come to be?
It's like in a pot of soup. We experience every kind of state of mind and soul. Love, frustration, anxiety, happiness, fear, doubt, satisfaction. The idea of the blog came naturally. We were always doing something extra for Achilles, we always tried to invent something new and exciting to do; fresh activities to be performed. We were always in search of books and products that fits for our teaching and learning needs. I thought that it would be great to just share. In my opinion the most important thing in ABA/VB therapy is to not be boring and not get bored. Only a parent of a kid with autism knows how challenging plane travel or even a simple haircut can be. Sometimes it's just one brilliant idea that keeps you away from a triumph. Maybe it's one of my blog's ideas for a reinforcer or a specific approach to face an ongoing adventure. You can find also information about the gluten-free casein-free diet (GF/CF) and sugar free diet which helped enormously in curbing inappropriate behaviour. On my blog, it's parent-to-parent talk. I am not a pro in any of those topics. Just testing, reviewing, experiencing and sharing. In my opinion, that's the best way to figure out what really works.
What is ABA/VB therapy and how has it shaped your son's upbringing?
I wan't be doing "copy - paste" of the definition from Wikipedia because everyone can reach it. I would like to tell you with my own words and ways what is Applied Behaviour Analysis and Verbal Behaviour therapy for us as a family — with no medical description but the way you decide to live and act according to the rules of ABA/VB.
After the diagnosis we started ergo-therapy sessions where after some appointments we were told that it would be better to engage Achilles in other types of "healing programs." He didn't really needed ergo-therapy itself, but the actual behavioural intervention. He was always a quick learner and very smart boy. So we wanted to switch immediately. We've heard about the great, absolutely the best therapy developed years ago in USA with top results. Here in Germany it was not really appreciated, maybe because not enough was known and it evolved already from the first, old, perhaps "too strong" and not flexible version of ABA.
After one year of bureaucracy, we started the therapy with the best European ABA consultants from Hannover. We went for a workshop to learn more about the method and ask some questions about near and far future. When we started, my son was completely non-verbal. He didn't even call me "Mom." Nothing. Only (as I call it) "bubblin mubblin." Some sounds put together, without meaning. Just to imitate the proper speech. That was...horrible. And in hindsight, that was the hardest part to delete during the therapy. He still trying to smuggle this "bubblin" when he was very excited and found difficulty trying to explain something and chose the right words and put it together.
ABA was not thought to be an intervention for autism. But clinical success of very intensive ABA training for individuals on the spectrum shows great results. It's definitely a family therapy. It's a style of life that you apply 24/7. No excuses. In a few words it works in a closing circle. First, we have to create a bond with the kid to make him feel just good with you. Play, have fun - it's called pairing. Once you have your mate, you can ask him to "work for you" and with change, you will be available to have more fun and play after the task you are asking for is followed and done correctly. It's all about motivation and reinforcement.
If your child is not motivated to do what you are asking for, why the hell should they do anything...and there is no price in the end... It's like breaking into a sweat everyday at work without a salary! Come on! It's important that every step leads you to gain the instructional control. Only when obtained, the results are extraordinary. Teach everywhere and whenever. It's the constant search for new stimuli, reinforcers, ways to introduce and explain a new goal. As every kid on spectrum is different there is no one and only way to approach it. Every family faces all different sorts of challenges. And for everyone, the strategy could be peculiar.
First, you have to learn how to proceed and then implement all the principles of ABA. It applies to all who has any kind of contact with the child. Parents, siblings, grandparents, teachers, neighbour. Rules rules rules. It's soooo hard at the beginning. Frustrating for the kid, frustrating for the rest of the people involved. But after a few days, the waters calm down. Verbal Behaviour is language training confined to the broad categories of “receptive” (a listener role) and “expressive” (a speaker role).
What has been the most challenging aspect of raising a child on the spectrum? And what has been the most fulfilling?
The most difficult and challenging was (and sometimes still is) understanding him, his needs, his fears, his emotions. Understand my son. Puzzle out what is in his head, what he is trying to tell me. So basically the communication. Or the lack of it at the very beginning. Struggles, meltdowns, tantrums...uffff. All that and more.
We were completely miserable. We couldn't go anywhere "just like that." We were always worried about how our kid will act, if there will be something what will disturb him and generate frustration which leeds directly to meltdowns and crying. Oh my.
The most fulfilling moments are those when you were told in the past that something is impossible, but you have proof that the truth is different. I was told my son can't tell me what is he feeling because he is not able to detect emotions. False. I was told he was non-moral, he can't judge his own behaviour, he does not know. Wrong.
I was told but I didn't give up. In spite of everything.
What advice do you have for other parents with a child on the spectrum, especially those using (or hoping to use) ABA therapy?
We are living in a scary moment in the history of humanity. Full of wars, terror and deadly diseases. Do not see and live autism as a disgrace or stigma. Autism is seeing, feeling and judging from the other point of view. Diversely. Sometimes in a stronger, more structured and generating frustration way.
Do not care about what people are saying. They do not know the reason for a meltdown. They have no idea what is in the background of your child's bad behaviour. They are not educated in that field. You can't enlighten everyone. But you can learn how to enjoy life and how to improve life for those on spectrum. You have to show them that they can cherish their lives, that they can love and that they are loved. You need to find the key. The right way. Find the proper approach that meets your family needs and be consequent. Patient. Self-willed.
For the ABA lovers/haters — figuring out how to teach and ease the learning process for kids with ASD is fundamental. It's freaking hard and exhausting but worth all of your commitment. Once you are on the right track — do not give up, do not lose your heart! There will be ups and downs for sure. But every proper, hard work brings results. I can promise. That's all.