The Faces of Autism: Meet Beau
Last, but most definitely not least, I would like you to meet Beau, a sweet 4 year old boy diagnosed with Autism. You can see him HERE from last year's project!
Beau was diagnosed with Autism Spectrum Disorder at 2 years old, his mom had suspected Autism very early on, knowing the signs from having an older child (Berkley, found HERE) already diagnosed. Beau had the deepest craziest growling sound as a baby and toddler. He nursed until 18+ months old and wouldn't eat solids of any type. He had a very difficult time figuring out how to drink from a bottle and later a sippy cup. Beau would lay quietly or make his growling sounds, he never cried out when hungry or wet, he was "content" or an easy baby. As he grew he didn't try to get to toys, reach for them or interact with family. He would fiddle with toys or ribbons that were given to him but didn't play with a toy. At 18 months he started Early Intervention and it hit his mom even harder when the Early Interventionist asked "What motivates Beau? What was something he liked that could be used to get his attention or get him to do something?" There wasn't anything - at the time he did not respond to anything other than being picked up and snuggled. Global delays was a term used to describe Beau.
Beau LOVES letters and numbers and spends a lot of his time "spelling" out words with whatever medium he can find - hot wheels track pieces, magnet letters/numbers, noodles at dinnertime, veggie straws, legos, etc. He "labeled" all his letters and numbers and then learned to identify some animals, food items, shapes, and other pictures in books and in life. Beau has an amazing memory. While he is not speaking functionally, meaning he doesn't just say what he is thinking, wanting or needing, he knows many, if not all of the words to cartoon movies, Moana songs, the infamous Let It Go, sounds from Minions, songs from Sing, and many of his preschool songs like Baby Bumble Bee. He is motivated by praise and smiles - he has learned to giggle and act silly in the last few weeks - stating "yeah, you did it!" when he does something or says something appropriate lately. Beau also has great strength and motor skills although he doesn't always display it appropriately. He climbs on the railings and up the fridge, jumps from heights and crashes into things. This is a great feat as Beau could not walk independently up and down the stairs just months ago! He still cannot ride a tricycle and doesn't alternate his feet on the stairs but can get to where he wants to and can climb anything he sees fit.
Beau struggles to talk, to express what he wants, and to let others know how he feels. A couple months ago, Beau was re-introdcuded to Proloquo2go, is a symbol-based communication app used by those who cannot speak. Beau has used PECS and other ACC basic picture boards to help facilitate speech but nothing has grabbed his attention and curiosity as this has. He can operate an iPad like no other and it offers him the freedom to explore and learn what he wants to say and be able to say it. The app uses pictures to make voice to text sentences. We have customized the selections to what he is familiar with. His mom will even use it to speak to Beau, as a way to model the behavior. He went from grunts and his limited request of "more" and "I want milk" to 5-8 word sentences like "I want to be all done and drink milk" in just a few weeks. Something as simple as requesting a food item may seem so trivial but for Beau, it is everything! He has the ability to request and/or state whatever he needs with this app. The app is also teaching him how to say words and he is repeating the sentences independently at other times too!
Beau also struggles with social interaction. Developmentally, he is much like an 18-24 month old. He has started giving "kisses" and holding hands, hugs on command, and saying "bye-bye". He prefers to play alone and doesn't understand sharing or turn taking and waiting for something or someone. He still needs to be held, in a stroller, or hand holding when the family goes anywhere. Beau does not answer to his name or STOP and will dart off at the slightest distraction. He floats along in his little world but everyday he allows me to see more and more of this world and he is allowing me to teach him more about ours.
His mom about raising a child with Autism:
"My family is unique - in that we have two kiddos with Autism, both boys. Berkley is my oldest and our first diagnosed - when Beau came along - the signs were more clear - although getting help was still just as difficult. Having a child with Autism, now, is my norm. It is hard to step back and realize all the things that have gone into making my children who they are today. Other families don't understand the rigid schedules, endless therapy appointments, reluctance to do new things and travel or go out as a family to new places, ect. My boys "shut down" vs "melt down" but they struggle all the same. It is so hard to know what your child needs when they have difficulty communicating their needs or expressing the emotions. A world that recognizes differences and individuality is a world closer to being non-judgemental. We all have quirks and differences, needs, and wants - we are all unique.
I describe Beau as my 4 y/o baby. He is, in many ways, a young toddler. I need people to understand that while he is a big boy his needs to match his age. He needs far more supervision and assistance than others his age. He can play and run and jump like other children but cannot do so in an open area, without me by his side, ect. This makes it tough. I see parents sitting and visiting at parks or the pool, or anywhere really - while their children play nearby - this is not my reality. I cannot let Beau play with such freedom and that is hard. It is so hard to let him have the freedom he needs while keeping him safe and it is so hard to interact with other parents while doing so. I, and others parents like me, do want to talk to you, we want to visit, but keeping our kiddos safe is more of a priority. Fenced in public play areas would be so beneficial.
Having a child with Autism is a lot of work. I can never really relax and that is hard. You can never really let your guard down - always being vigilant about doors, locks, sounds, ect. The numerous therapy appointments, meetings, ect. can be daunting. It is a lot. It is hard to balance typical activities and family life with all of that but they all are equally important.
The most important thing I can share with others is that everyone is different. Everyone has likes, needs, and preferences - disability or not. Be patient, kind and accepting.
And lastly, if you suspect any delay in language, motor skills, or have any "gut" concerns about your child or someone else's - refer to Right Track, Early Intervention, ect. Early diagnosis and intervention is key to success and progress. Don't delay. Don't worry and wait. Check it out."
This is what Beau had to say about having Autism: "A-U-T-I-S-M" Beau spells Autism every morning when he gets into the car, it is on a sticker on the outside of his carseat.
His mom would also like to add this great piece of advice that everybody should know
"Being a parent to a child with special needs can be very isolating and lonely, and it is easy to get into a routine that is all about your child, or children, and their needs. So, if you know someone who has a child that has special needs, please remember to make an extra effort to reach out, whether it's a message, phone call, or a coffee date. It will be appreciated more than you can imagine. If you are a parent to a child with special needs, remember to take a little time to yourself sometimes - this is still something I struggle with! No matter how hard it is, it is worth it and you deserve it.
It truly does take a village to raise a child. It took many years of feeling alone and struggling to understand the system but one random day, along came my village and we have grown. I do not know what I would do without my dearest friends and their children. Blood does not always define family. If you are struggling with a diagnosis, needing a diagnosis, understanding the cumbersome system that you and your family have been thrust into - fight the urge to shy away, to feel like no one will understand - because we do and while each and everyone's experience is different there are many commonalities. Please reach out."
Just in case you were wondering about the app mentioned, HERE is more information. It is currently only available for Apple products.
If you suspect your child may have an Autism Spectrum Disorder, there are great supports in the community. One of my favorites is BisMan Autism Families on Facebook, the people there can help guide you in the right direction, and throughout the process. They are an amazing village to join.