5.11.2014

Hey Soaps, Speak For Yourself!

It just came to my attention that for those that are not following us on Facebook (and by the way- why not?), the last post here about our communication journey was this one. We have come a long way since then.

At the time of that writing, I was overwhelmed by all the choices and doubtful as to how to proceed. To be honest I was also afraid. Not afraid of spending $200 per se, but what spending that money signified- that we were going for it. No more dabbling with picture cards or simple press-and-go apps. We were taking the communication plunge; I was going to start teaching Sophie a comprehensive language system. I was terrified.

The app we chose (after months of deliberation) was Speak For Yourself. I'm not going to write a complex review of its features as it has been done before, by people smarter than I. You can watch the company's overview video here, or read Dana Gaeckle Nieder's review here (if you are at all interested in AAC, and especially if your child has been evaluated as having complex communication needs you need to be following her blog. Need). Those two links will tell you all you need to know as far as features and what makes the app so brilliant. I can tell you why I chose the app myself.

At the start of this year, I just had it with PECS. Sophie was very good at ripping off little velcroed images and bringing them to us in exchange for snacks (mostly) or favourite activities (sometimes). I kept discovering words which I thought she might want to say and running to the printing/laminating place, then cutting the sheets and arranging the cards in her binder in the evenings. But I always felt like we didn't have all the words she wanted to say, the cards kept getting lost and I was generally getting frustrated. I wanted something more cohesive, easier to edit and less cumbersome. I also wanted a system that could start off very simple, essentially replacing her binder, but which could grow in a way her binder just could not. Speak for Yourself fit that criteria perfectly.

Sophie's initial screen (note the cheeky argument she has in the message window)
Her Thomas character screen
Her food page

As you can see, there are not many things there. That's what I love about this app. We could start as simple as we wanted (could start with one word if that's what was needed) and keep adding words - the capacity is 14 000. The genius part- due to the motor planning component, as we keep adding words, the existing words will never move (hence all the empty black space we have. Room for many, many words).

Sophie took to it immediately. My girl, she is clever. Now, I am not bragging about her IQ or whether or not she will have learning disabilities or cognitive disability or anything like that. She needs a language to be able to be tested for those things, any test we would do now would grossly underestimate her abilities. Given her unique brain, I'm sure there are many challenges ahead- BUT. She is clever. I think I am fumbling around more with teaching her words than she is at grasping them. We are going very slow (so I can keep up).

Sophie's screen now

 

Every weekday during little man's nap Sophie sits in the kitchen and we do our AAC lesson. We go with her level of interest, lots of modelling, lots of motivating items and repeat, repeat, repeat. As some of you know, I managed to secure a communication disorders/AAC therapist for once a week to help with our lesson (no small feat, trust me). Seeing how she models and reinforces with Sophie is quite helpful. This Friday was our first session with her. When she saw Sophie produce spontaneously "I watch jack", "more meatballs" and "want juice" she assessed her at using 2 word phrases. If I could convey how it felt to hear those words about my "nonverbal" daughter... I'm still walking on air.

It feels more comfortable now, we are falling into a groove. Next step is getting Sophie a dedicated device where she would be locked into the communication app. Communication just can't compete with Thomas I'm afraid. This is next on the agenda.

I'm attaching useful links regarding AAC that I personally use. I'm sure there are many others, but my time is limited so I stick with the tried and true. Enjoy! Feel free to ask any questions.

Links:

Speak for Yourself website:

http://www.speakforyourself.org/

Speak for Yourself closed Facebook group (I find it very helpful, many AAC devices are discussed, it's not SFY exclusive):

https://www.facebook.com/groups/273873326092019/

Uncommon sense blog:

http://niederfamily.blogspot.ca/

PrAACtical AAC (good resource page):

http://praacticalaac.org/

 

5.08.2014

Parenting styles and autism acceptance

I sometimes lurk on Facebook discussions in the autism community. I don't always participate, especially during heated arguments because I tend to shy away from confrontation and also because I realize that my views diverge from the mainstream. While I am a proponent of autism acceptance, I always try to see things from a human/parenting perspective and not just an autism parenting perspective. After all parents of autistic children were always just people first, and often parents also before having an autistic child. People from varied backgrounds and differing viewpoints on many subjects. So I think it's hard to judge people solely in the vacuum of what kind of "autism parent" they are. One has to take into account many factors about a person when forming an opinion. I will take this opportunity to discuss my parenting philosophies and how I believe they have made me into the "autism mom" that I am.

Even though I was a "young mom", I always strived to be a mindful parent with my two older children. I made decisions mainly based on what felt right to me, and not so much on what other people told me. I chose what used to be called attachment or natural parenting (although I am wary of labelling my parenting style, this is more for reference purposes) and breastfed my children, co-slept, carried them in carriers and slings and strived to be a gentle parent. Parenting was a fun adventure (for the most part). I loved taking the kids outside, playing with them and seeing things from their point of view. Above all else I respected them as people. My belief was always that behaviour is communication, so instead of punishing them for being upset I tried to find the root of their feelings. We talked about feelings a lot. We learned why certain actions are mean or hurtful. I took every opportunity to model respectful behaviour towards them, their father and any other people we came into contact with. Firm guidance instead of time outs, redirection instead of punishment, calm gratitude instead of rewards for good behaviour and enjoying each other as a family on top of it all.

That is not to say I never faltered, lost my temper, snapped out of tiredness or frustration, had children throw themselves at the ground or slam doors. Things happen, a lot. It's how we react to these things that matter. If I act in a way that conflicts with my parenting standards, I apologize. We apologize, we reconnect, we adapt. I don't abide by the "respect your elders" rule- I believe respect must be earned. Of course I don't want my kids be deliberately rude for no reason, but if I hurt their feelings or say something they perceive as unfair I want them to call me up on it. We will discuss it and may or may not agree but everybody's points will be listened to. One of the things I always try to keep in my mind is that my children are individuals who will be adults one day. I don't want to force them into compliance until they are big enough that they don't have to listen to me anymore. I want to help them learn to reflect on themselves, to want to to do the right thing, not to avoid punishment, not to get a reward but just because it is the right thing to do. We talk a lot about many subjects, including tolerance, acceptance, kindness, compassion and treating others how they would want to be treated. They are growing up to be quite amazing kids. They also have an incredible bond, especially given the fact that they are a brother and a sister, three years apart and with very different personalities and interests. Yet, they are quite obviously the best of friends who can spend hours playing together and more often than not are hanging out in the same room even though both have their own.

I have written many times before on Sophie's babyhood. Sophie was a very-welcomed third addition to our family. She was born at home with the help of midwives and was a sweet and gentle soul from birth. As most of our readers know, she developed more or less on track then suddenly regressed. I have written several times about that as well, that isn't what this post is about. I only mentioned it because a lot of the times when I read about parents being told to accept their child's autism and stop trying to make them "normal", the argument "well that's all fine and good for you parents of high-functioning kids, but us parents of severe kids can't just accept that" gets thrown back. Well I am here to dispel that myth. Sophie is more than just "on the quirky side of life" (I did hear this exact phrase used in a discussion). With her regression, coupled with her brain malformation and lack of spoken language she can comfortably be classified as severely autistic and disabled. Accepting your child as she is, is not accepting defeat, or giving up hope or in any other way failing your child. Accepting is just that- accepting that your child is exactly the way he or she was supposed to be. There was no typical child lining up to be your child suddenly replaced by this one. This one was always the one, your child- the one you were meant to have, love and raise.

The kind of mom I already was prior to Sophie's birth made this process relatively quick. I already believed that my children are their own unique people, for me to love and guide only, not a reflection of myself, not a vessel through which to fulfill all my dreams and aspirations and not someone to control and mould onto a perfect specimen of a child. When I felt sadness and grief initially I realized what that was- it wasn't anything to do with Sophie, it was my own thing to work through and I did. Once I let go of the would-have-been child, I focused all my love and attention on the child I had. And I pared everything down to what mattered- our relationship. I dismissed ABA immediately (in its classic, Lovaas form. An aspect of behaviourism is present in all mainstream education scenarios). I just couldn't justify any of it, considering how I felt children should be raised, nurtured, their objections acknowledged and respected. Locking a screaming child in a room with a therapist to perform repetitive trials of the therapist's choosing was akin to being told a baby left in a crib to cry was "learning to fall asleep". Neither scenario sat well with me.

Floortime was a method that I could relate to much more. Many of the philosophies were closer to what I was already feeling, and the playful engagement was similar to the ways my husband and I interacted with our kids. But I still didn't believe that 100 percent engagement all day was a) realistic and b) beneficial/necessary. I could see that Sophie could handle only a little bit of hands-on interaction after which she would begin to shut down (fall asleep in her case). Obviously too much stimulation overloaded her sensitive system. I decided to observe first, do later, but in the meantime respond to every single tiny fleeting attempt at interaction Sophie provided. And thus our own form of "therapy" was born. Also known as, respectfully parenting our child, taking into account her unique needs and style of behaviour.

What seems like a rather mundane and obvious choice, is apparently quite revolutionary in the mainstream autism community. Yes, Sophie attends a half-day special-needs nursery school with a very child-led philosophy, where her communication attempts are acknowledged and responded to and her environment modified to best meet her needs. She did have a 10 week ABA group session with a focus on PECS once but is currently not doing any ABA. Her speech/occupational therapies are integrated into her school days and are above all else - fun. We don't drive her around from therapy to therapy after school. Instead she does things our other kids did- parks and rec programs, community playgroups and lots and lots of playgrounds. At home she is mostly on her IPad, which we are thinking about frequently and offering other options whenever possible, but ultimately allow her to spend her free time as she sees fit.

Since she is nonverbal we are focusing on AAC communication - that is the key area I am pushing for support in and putting an effort with at home. Why? Because communication is in her best interest. I want to give her the tools to allow her to speak her mind, just like it was important for me with my other kids- she already loves to tell me no no no no no via her device- we are on our way. Since I am not spending any time (at all) minimizing her autistic traits or trying to make her "blend" most of our time together is spent relaxing, playing, interacting and connecting. People always comment how wonderful her eye contact is. I respond that I never force or even encourage it. When she looks at us it is because she wants to. I try to give her every opportunity to do what the other kids are doing, but don't take it personally if she doesn't want to - I'm not doing it to make myself feel good! Why would I be upset that she doesn't feel like doing some "fun" activity? There are many "fun" activities that I don't like at all- like dancing, sports, parties, wearing heels. I would hate if someone thought my lack of enjoyment of them affected their life in a negative way.

And that is the nutshell of how autism acceptance works in our family. Sophie is autistic, but she is a child first. We provide her with opportunities to do whatever other 4 year olds like to do, but are not frustrated/disappointed if she doesn't want or isn't able to do those things. We are not cursing or bemoaning autism, we are not soliciting pity and we are living our lives mostly as before. Sophie didn't put a stop to our lifestyle with her autistic self. She isn't draining our bank account because other than her IPad we aren't paying for a slew of interventions to extinguish her autism. She isn't aggressive in general, but we are able to prevent many outburts by recognizing and honouring her triggers and upset cues. We aren't waging a war on her autism, desperately "pulling her into our world". Instead we peacefully co-habit in the shared world that is our family, autism being just one trait of one of its members. Quite honestly, outside of this blog autism just isn't such a big part of our life. By no means is it an elephant in our room, casting its large shadow over our life. Accepting Sophie as she is was never really the issue. Navigating a bureaucratic public education system with a bias against special needs' students is still ahead of us, but that is not Sophie's fault. She is our daughter and we are enamoured with her exactly as she is. We will figure out the rest as we go on.

 

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