Many parents and experts speak about self advocacy for those with disabilities. Classes, presentations, trainings, all sorts of educational pieces to encourage or teach self advocacy to children or adults with developmental delays. I’ve read extensively on topics ranging from self care to IEP attendance/input, and guardianship hearings.
What I don’t find is how self advocacy looks for a child who is severely and profoundly delayed like Larkin is or more so. I felt like a failure, sad and tiny bit irritated when I would read or be invited to seminars on the subject and there was a whole other level of discussion via a group on social media from adults with disabilities who think parents have no idea what their child feels so parents/caregivers should not take the stance to speak for the child. More self advocacy that has no place in our life because it doesn’t fit our child’s need.
I thought long and hard about this because it truly gave me pause due to the passion this adult (who happens to have Autism) brought to the discussion. I was angry at first because how dare she tell me that I have no idea what Larkin feels or needs. I do know this child and everything about her and the majority of my life is navigating her needs or wants.
I finally realized one of the most heartbreaking pieces to this life ~ I can’t speak for this child from her point of view nor can I tell her story as she feels and knows it. She can’t articulate it either and that brings profound sadness to my heart BUT not to hers so I need to get over it.
During Larkin’s IEP team meetings over the past 7 months her teachers and those who I invited to be included have really helped articulate what Larkin CAN do versus what she isn’t able to do. Promoting her strengths and write goals that bounce from there and it has been really awesome to put this together in a fluid flowing document that will follow her thru the years.
We don’t gloss over the hard stuff and I’ve had a few times in that room where I am not able to speak because of the lump in my throat and the grief that threatens to overwhelm me.
What became clear to me as the school worked with me was allowing Larkin choices thru her day. Giving her time to relax in between therapy and working. Working for a child like Larkin looks very very different than a typical child but so does chilling out.
It was in those moments that I realized that our entire life and home is set up for Larkin to self advocate.
I changed our home a long time ago when Larkin was having clinical seizures and falling constantly. We bought soft furniture, padded the rugs, and moved things off of the walls and tables because she is excellent at clearing them off in one swipe. Today Larkin has subclinical seizures all the time but no clinical presentation (knock on wood/throwing salt) but she continues to clear a table or wall in one swipe. She could play in the major leagues of clearing.
Rooms in our home are set up so she can easily navigate what she wants safely. Gates are in place for use when we don’t want her in the kitchen but for the most part she has free run. Items that she wants are placed in the middle of the kitchen island so she can indicate to me what she wants but not be able to dump it out.
She will come into the kitchen and sign “more”, approximate verbally the word “more”, and sign “eat” and I will give her the pretzels that are her favorite. I sometimes will offer her a choice to see what she will do. Cheetos will always be the item preferred but I might give her a choice of cheese or pretzels.
Mealtimes I prepare a balance of items and Larkin clearly indicates to me when she no longer wants veggies, meat, or yogurt. She might do it by shoving my hand away and spilling everything but I am cool with it because it is communication. She also has a sign for “all done” and will often approximate the word “all done” at the same time.
Larkin also changes rooms and environment given her mood at any given moment. I prop open the door to the backyard so she doesn’t have to open/close it. It’s a very heavy door and she is able to open it but I don’t want her to get hurt so I just prop it during the times of the day/night that I allow outside play. She tends to move through her day in between the front room playing with different toys, watching Joseph and The Amazing Technicolor Coat (we’ve watched it to the point of wearing out 6 cd’s now), or being outside on the swing set and eating dirt.
There was a time when she spent all of her day in my bedroom in bed and was very content there. I was worried about this after a while because it seemed to me that she wasn’t exploring but eventually she changed rooms and now it’s a chaise in the front room where she spends a good amount of time watching the world out the window. It’s very calming for me to see her doing things that show me the seizures don’t own her brain for as much as they occupy space there ~ they don’t own my girl.
Self advocacy for Larkin is exactly what it should be. Telling us what she wants, needs, and changing her environment as she wishes. All things done within the limitations for her safety but again she is advocating for herself what she wants.
As I was working on this piece a friend and fellow blogger asked if she could feature my home in a first of series she is doing on local homes and how people live in them. I was honored that she would consider my life/home and I love Julie who wrote the piece. It’s interesting how we may not realize how many of us out there don’t live in perfection but bask in the imperfections that create a home where children and friends can co-exist in love. Check out the blog piece and leave her a comment. For pete sakes the girl can’t live without comments 😉
I realize I don’t need to judge my parenting skills against others, conferences, training sessions, or anything else. Larkin is my best barometer and today I have a little girl who moves about her life and family as only she can ~ full speed ahead, usually smiling, and sometimes eating dirt but always by making the choice herself.