The start of Early Intervention
Main Sequence
Early Intervention is a great program full of wonderful people that truly want to help. We started with Physical Therapy (PT), and Special Instruction (SI). Our therapists were and still are amazing and worked really well with our little star. Then the world shut down for Covid-19 and all in-person therapy was canceled until further notice. We then went to "virtual" therapy online using Zoom Meetings and Face-Time. Here is where we learned a lot. This forced us to really notice the short attention span, and that he really didn't understand how to play with toys and didn't want to interact even with us more and more. We had thought up to this point he was just disinterested. Tantrums, Meltdowns, and stimming started to become more pronounced...oh, and did I mention hair pulling and biting increased with his level of frustration. Up to this point, we had thought the biting was due to teething but now we were noticing (feeling) that it was a way of communicating frustration and weirdly enough also love. Ever hear the phrase, "I love you so much, I just want to bite you," well he did...a lot.
We did all of our sessions virtual but they were not giving us the results we thought we should be getting. Our little star cried a lot and wasn't responding to anyone. He was approaching 2 years of age and any of the few words he knew he had lost along the way somewhere. That sadly included mama and dada.
We finally insisted on an ADOS evaluation. This was the first of 2 autism diagnoses.
Since the ADOS evaluation had to be administered virtually instead of in-person because of COVID-19, we took him 2 months later to a Neurologist at NYU, where she agreed after her evaluation that he did indeed have autism.
About Us... A little more
The Protostar
The start of Early Intervention
He was born perfectly into our family at 2:14 in the afternoon one hot July day. Everything went well with the pregnancy and birth. The whole family was there to welcome him into the world with open hearts and arms. He passed all the tests with flying colors at the hospital and came home 2 days later.
Before his first month was over, he was diagnosed with Acid Reflux and Laryngeal Malasia that made it difficult for him to breathe normally. We had to keep him upright at all times. This helped his breathing and reflux. Tummy and back time had to be heavily monitored. We were also noticing he wasn't making a whole lot of eye contact. It was as if he was looking above us like there was something else there. Crying also had started to become the natural way of everyday. We knew at this point he needed a little more TLC than just a tiny newborn, so we gave it to him.
He didn't achieve the "normal" milestones, but we chalked it up to "not every child is on schedule, some take a little longer," and managing the Laryngeal Malasia was on the forefront of our daily worry. Luckily by 7 months, he was growing out of the Laryngeal Malasia and reflux, but he still wasn't sitting up or rolling over yet. The first day we left him at daycare we were all nervous. This was an amazing place that we had known for years, our daughter went there. They were like family, but we were still so nervous. We were instructed that day by his teacher and our dear friend the owner to start the Early Intervention program to get him a little extra help. This is the beginning of our journey.
Supernovae
Keep moving forward, do not stop. Once you find the magic piece, you find your magic peace...
Our star has great facial responses. His hugs would melt your heart. He has compassion and is so full of love. We have been told he is an excellent problem solver and self-directed. So, he learns differently and on his own time. That is ok. There is no race, no one gets a prize for finishing first. We are just so elated he participates every day as best as he can
We are still in ABA therapy with our 3 teachers. We also have an Occupational Therapist and a Physical Therapist that come to the house. We integrate music therapy and practice calm-down time with essential oils. We are getting ready to start color therapy. We separate his snacks into little 5 ounce cups and use PECS and sign language to help him communicate. We laminate and velcro anything that could be a learning tool and we are constantly seeking new ways to improve. We make toys ourselves when we can't find things that he can connect to. We watch specific episodes of The Hive, Mickey Mouse Clubhouse, and Sesame Street on repeat. We sing with CocoMelon and Plim Plim and try to make his day the least frustrating and as fun as we can.
We wake up every day as if it could be the best day ever. Try your best to not have any "normal" expectations. If your star isn't ready to do a task or understand something you want them to, don't worry, do your best not to get frustrated, it will come. Enjoy the time, be present in the moment you are your star are sharing, they might teach you a thing or two!
What lies behind us, and what lies before us are small matters compared to what lies within us. – Ralph Waldo Emerson
Red Giant
Autism....Seeing the world from a different angle
Hearing the doctor's words at the primary evaluation say he had scored in the severe range on the ADOS test was... well there are no words to describe that. People that do not have stars on the spectrum don't always understand the feeling of numbness. We were confused, concerned, relieved, sad, and seeking so much more than, your child has Autism, make sure he gets therapy. I mean.. what did that really mean? Will he have a "normal life," go to school, be successful, prosper? (No one knew and no one had any answers except, "every child is different, get him as much therapy as you can." It was something that had been in the backs of our brains for almost a year and a half. But now a doctor said it, and 2 months later the Neurologist from NYU face to face confirmed it. The unsettling diagnosis was set in stone.
We knew at this point we had to do, study, research any way that could help our star shine as bright as he could.
Google became a great source of answers, but for every good answer, I found there were so many other contradictions posted. There was so much to learn, like: What is the spectrum? What does that really mean? What is autism? How did this happen? How do we teach him so he can lead a "normal" life? What is the difference between a tantruming 2-year-old and an autistic meltdown? How do you distinguish 2-year-old frustration from Non-Verbal Autistic frustration?
We had just started ABA therapy, and we had a lot to learn.
The Fusion of Heavier Elements
The unofficial start of the learning...again...again...again...again...
One of the great parts of being in Early Intervention is that you can work with your director to get the help you need. Since we now had a diagnosis we needed a team of ABA therapists to start doing virtual therapy. We started with 2 women. One teacher and family trainer and one just a teacher. We then requested a male teacher join the team so our little one might get a different perspective on learning.
Let us start out with, What is ABA anyway?
ABA- Applied Behavior Analysis is an established scientific method of therapy. ABA is a way to teach and manage behaviors. ABA is a bigger term that can cover many specific and unique strategies. Some examples include Incidental Teaching, Discrete Trial Training, and Verbal Behavior. ABA therapy for us was a daily therapy where we had 8 sessions during the week lasting for an hour to an hour and a half per session. We learned so much with our instructors, especially that our star learns differently. It's best to not have any expectations of your star and help them learn from where they are. They will show you how much they know.
We thought our star just didn't like toys. It wasn't that. He didn't understand toys or how to play with them. it just didn't make sense, it wasn't motivating him to be happy. ABA therapy helped so much and now our star will look for certain toys that he likes!!
Physical Therapy is amazing too. Our therapist was amazing. You have to love your therapists, and they have to have a genuine care for your star. If you sense they are just doing this because it is their job then find a new one, don't ever feel stuck. Out PT, broke down every step in order to teach our star how to sit up, crawl, and walk. Every week she would come and cheer him on and felt happy, and proud when he did a good job. It wasn't rainbows and sunshine at every session, but she didn't care, she kept on making progress with our little star. He is now onto bigger gross motor goals.
Finally, we were able to include Occupational Therapy. OT is focussing on helping stars with fine motor, sensory-motor, visual motor, and/or cognitive disabilities. They help stars become as independent as possible in doing daily tasks. They encourage independence with activities of daily living (ADL’s) and self-help skills to include dressing, feeding, bathing, and etc. Our OT was a wonderful kind and caring. Always there to give advice, books, resources and would let us try things like the weighted/compression vest prior to purchasing it to see the effects first. She helped us learn about the 8 senses. (click here to read, FAQ section)
Eddie learned a lot better when he did a lot of heavy work and heavy movement. We installed a swing in our house to help balance his vestibular system and had peanut balls, exercise balls, and 2 different trampolines, just to name a few to help desensitize his sensory disorders.
The knowledge we have learned, hiccups we faced and successes we celebrated will be posted in our Blog, Browne Bears it all. To keep reading and learning with us, sign up today!!
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