Wow, it has been an amazing summer so far filled with just incredible changes in Bird, stresses for both him and me and an outpouring of love and help from our community.
We live in a sprawling suburban area in Northern Virginia with lots of neighbors and tons of kids. When Bird was first diagnosised these tons of kids were a reminder to me of all the people who would not want him as a friend or confidant and I wanted that to be my identity; sad mother with a child on the spectrum it was comfortable and people wanted to console me and I wanted to be consoled.
Fast forward 8 years and you find a sweet boy with autism now 10 and a filled social calendar with friends, soon to be friends, kids who want to help and parents who are truly vested in his journey to understanding social menusha. I shook off the desire to be pathetic and pitied to fain hopeful parent with kid on the spectrum and then to proud parent of kid on the spectrum.
From a kid Bird played soccer with to kids from his classroom, to kids in Bird’s older brother’s classroom and so many kids at the pool we have been provided with 2-3 kids everyday 4-5 days a week to work on socialization in our house.
Bird is video taped by me, Les or Nick while playing with his friends doing everything from imaginative play today, to playing Magic cards or video games. Bird is taken away quietly from the group for 5 minutes every 30 minutes or so and given a little feedback on what was videotaped with a 3:1 kindness to error correction which means that he is given a variable over 4 comments of which 3 are verbal praises to 1 “you need to work on that” “that was great but slow down so they understand you”” did you see him look a little surprised when you were really loud right there?” It’s critical to give a lot of positive feedback before even considering giving correction first because kids do try to engage and should be told that this is great because it is and second because they will HATE seeing the video camera and being told repeatedly that they did this or that wrong because they have feeling just like everyone else and criticism even with compliments hurts.
This is our forth year of videotaping social situations but definitely the first year it was the main focus. The change in just 2 months has been pretty great but over 4 years has been miraculous. It has taken 4 years to get here and I say this because I really love my friends and neighbors and their kids for giving us so much time, compassion and patience through what can be for the child working with Bird (rarely these days but a hell of a lot in the past) frustration and sometime a little stress for responses that aren’t given or questions unanswered. It is a DAILY not monthly effort and if that effort stops not only would Bird lose some maybe a lot of his skills (as seen when we don’t work academics constantly) but also could cost him in friends who really enjoy the evolution they see in Bird.
People have made such great efforts to have their kids here to be with Bird it really gives me hope for the future and the truth that you need one another to be successful in life on so many levels. I believe that it is really possible to gain peoples desire to help your child as fuel to feed their success and if you really want it and are willing to reach out so many people will come forward you will have to keep a running schedule. We are truly blessed and I want my reader to believe that they to are surrounded by people who care (and a few who don’t but don’t dwell on them) and ASK for other people’s kids for 30 minutes and hour once a week to help you help your child. PLEASE make sure your child is not aggressive, self injurious and that your child has a form of communication (sign, assisted technology or verbal) in which to work with the child but socialization is something you work on after you get language and behaviors under control.
This brings me to a small vent as I am so incredibly stressed by this summers program despite the great results (though delighted, proud and grateful to be able to do it) so I have to unload a little anger about old friends who are not helping their kids achieve their potential. Before anyone wants to beat me for bringing up my dead horse about effort I would like to point out for those few readers with typical kids that you have a chance (a small one) that you kids be President of a major corporation and happily married even if you ignore them but kids on the spectrum do not have the luxury of community living unless loads of effort is put into them….please consider this before hating me. We have some friends who have autism and all the potential in the world but mom and dad seem to either not they have potential, make excuses or believe that the kids with either a) out grow autism or b) can be worked on at a later date. Why is this my business at all you may ask yourself? I make the mistake of falling in love with people’s kids and believing that they will be close friends with my son in years to come. I have friend’s child over a couple times and they misbehave a lot but I move on and we still see them….then they trash my basement or say really inappropriate things to my child (which really offends Bird) or Bird asks me why his friend does not really speak to him or is not getting better because he knows he is getting better. Today Bird asked why a friends son is in his words,”Not getting autism help? ” when he asked about a friend he doesn’t get to see much these days. I told him mom was really stressed which is likely true. However, just imagine how stressed she will be in 5-6 more years when it’s glaring that he is not living the life he really could have at 18.
I have a really long way to go with Bird and he has a lot of years of work ahead of him and I pray to God that we have the strength, time and money to keep up this truly painstaking work, and maybe I won’t so we shall see. I also pray to God that 4 girlfriends who have the potential to be the most amazing moms ever wake up and continue on the journey towards successful kids. Our kids with autism are not blessed with the possibility that they will “just be fine” or that they will progress on their own. Constant effort, attention to detail, how will this look in 5 years, always keeping them engaged, vigilance with regards to attitude/behavior/manners/and back and forth conversation and a total belief that even if it’s embarrassing you still have to take/do/go/invite/be rejected/ignored and actually talk down to in the name of helping your child with a smile and the knowledge that tomorrow is another day and a little rejection is a small price to pay for a kid that will someday get to experience/learn/grow because you took another pie in the face.
I wish you all peace and a great rest of the summer! Work hard on your kids and when you dead tired tomorrow or in 10 years you can look back and smile with great satisfaction for investing your time in something really worthwhile.