Great Class with Family to Family Network – 10/6/18

I just love going to these classes with Judy Blake and the Family to Family Network. They have been very informative. I’ve said it all along – “Special Needs and Disabilities” is a huge umbrella and neurological disabilities are very different from physical and both of those are different from emotional. But the one thing that I am learning is “terminology” that we, categories that “all” those under the umbrella are placed in, etc. I think we as parents make the best decisions for our children that we can and we watch and learn from other parents and sometimes the cycle of acceptance won’t be broken that way.

A short blurb review of the class (this by no way covers all the wonderful stuff) just some highlights.

As amazing as the speaker (Kathie Snow) was and her vision and the amazing stuff she’s done with her son, it was both informative and conflictive as our children have different disabilities and therefore approaches to life success will have to be different. Kathie Snow really stretched my brain and I am grateful.
A few things that were very impactive to me from Kathie Snow during the last class. A very powerful statement from Ms. Snow was the difference between independence and interdependence. These were mindset changes for me: I always say I want to try and help Tyler be as “independent” as possible since he will more than likely live under my roof his entire adult life. Well the truth of the matter (a light bulb moment) is that none of us are truly independent, none of us. We are all “interdependence” in some form. So in my mind am I setting Tyler up for failure with trying to get him “independent” when I myself am not “independent” This explanation came in a form of a “simple explanation” We the participants were going to rely on the organizer of the event to provide lunch, and that organizer was going to rely on the pizza location and delivery person to bring the lunch and the pizza location in order to make the pizza relied on businesses to supply the ingredients and those suppliers relied on the farmers to obtain the ingredients, etc, etc etc – very few people in today’s society are totally independent. It’s all in the terminology and how we adapt to that terminology. I want Tyler as independent in his personal care as possible (I don’t want to have to bathe, hand feed, change his clothes, etc) I want to continue on the path for him to be “contributing” to the “interdependence” that we will have sharing household chores and duties. But using the terminology “independent” is not a reachable goal since I can’t achieve that myself. Using a different terminology and accepting different goals related to that terminology, eliminates a stress overload to me (on a mission to succeed) and sets him up for success and not failure.

I did realize from her lecture – that I as a parent (though not 100%) have fallen victim to the society expectation of “special needs” and “disabilities”. It is true what she says that the disability community is the largest minority communication in the nation.  I do buck the system a lot because I don’t believe that the medical, therapeutic and educational communities know my son better than me, but I like to work with them not take everything they say for absolute.

You know your child, you know their limitations and their strengths – I do agree if the child has the ability to make life decisions they should be making them, even if they are the wrong ones, like us all, many times we have to learn from our mistakes. I dispute some of the views on complete inclusion because in my son’s situation he thrives better in smaller less stimulating environments, BUT this isn’t the case for all individuals with a disability – so, with that, never allow the school or society to place limits on your child as a result of their disability if you truly feel that they can exceed in various areas.
Great reminders about how we talk about our children in front of our children is very impactive on how they think about themselves. Tyler is recently becoming very responsive to things I say to other people, so he’s actually gotten to a point where he’s listening, hearing and absorbing, long gone are the days of me talking “about” him in his presence. This should be a skill that I addressed years ago – reminding myself, though he appears to be in his own world he is a part of this world. He may not have been paying attention or absorbing in the past (but he’s getting better at doing this now) so now it’s a habit that I have to break from, so I agree with Ms. Snow, we as parents should alter those habits that we’ve created (unintentionally) so that we don’t have to undo those in the future.

I also like her vision on “Presume Competence” – this applies to your own child and any person you meet with a disability – it is a mindset that we have parents and community seldom have. I LIKED that statement.
She mentioned having Big Dreams and Goals. The dreams and goals of that should be (if they can) that of our children and we should not crush them. I am a realist which could be goal crushing. Now I like having Big Dreams for Tyler – and those dreams may not come in a society scheduled time, but it doesn’t mean I love site of the goals or dreams just because it’s on a different time schedule. Tyler has achieved things I was told would never happen. But Tyler, right now, doesn’t have his own dreams and goals but as his brain development improves, he may find a dream or a goal and I want to be able to support that (reasonable) or find an alternative to that goal, but I don’t want to just crush that possible goal.

Segregation from the beginning – depending on your child’s disability – again you will know what is best for your child, but we begin to segregate our children, with disabilities, at a young age and we adapt them to segregation. For some like Tyler he does much better in a segregated environment but for others segregation (even at a young age) may not be what is beneficial for them. We shouldn’t just assume that the label presumes that segregation is better. Sometimes basic milestones that aren’t being achieve for children are focused on too much instead of finding accommodations immediately to help them succeed. (Powerful statement: provide too much help to a person (and they become helpless) We tend to have lower expectations for the disabled and they sorta falls under the not presuming a person with a disability is competent. I like that she mentioned Inclusion is the natural state – we are all born “included”. That was an interesting statement. We need to help our child, find their strengths, abilities and if we can their hopes and dreams. Our children are more than their medical diagnosis. I loved the “impactive” statement that we will all have some sort of disability throughout our life or as we age. We might be born with differences (neurological or physical) or something may happen along with the way from accident/injuries and from the normal aging process.

NOW again and I keep repeating this – it will differ depending on your child. When you research information like this or attend seminars and classes – take what you need from it and leave the rest.

As much as I love Tyler’s teachers, I had a conversation with the new teacher the other day that sorta rubbed me the wrong way and knocked my “hope” for Tyler right out from under me. I haven’t responded to the teacher because I am trying to process what she said and how I feel and my realistic type of thinking – and I’ve read the book (listed below) and I am writing my response out so that she and I can discuss this at his upcoming ARD.
I could write about all the things she spoke of, but in reality it’s my perception of what she discussed, I highly encourage everyone to visit her site and possibly purchase her reading material and form your own personal opinions and ideas. Feel free to visit her website (she has a lot of great and downloadable information)– I got the small version of her book, I bought Apple-Bites – Common Sense Disability Strategies for Everyone – She is a powerful and at times an emotional speaker. She doesn’t claim to have all the answers but loves to share ideas for people to find their own paths and not be stopped by society adapted limitations.

The first of the class had to do with Bullying. I really loved that the speaker was not a fan of 0 tolerance policies, indicated that schools need to do away with “bullying” group therapies that the bullies attend and that she should incorporate a type of all around daily “kindness” type of training (yes you can’t force people to be kind – some people are just demon seed) but exposing some people to something that they may not have in the home environment will help. This needs to be done at all levels of school – about 10-20 minutes a day to discuss sensitivities. The Special Needs community is such a large target for bullying because many of them lack the social skills to understand what is happening to them, but no one should be bullied.   We need to be reaching out to our schools and asking them to change their policy.  (Schools normally choose to follow their policy that they’ve accepted)

It was a very informative class and I am looking forward to the next one in November!


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