I think one of the hardest things to do when raising a child with special needs is to get the world to bend to them and their needs. Trust me, the world will only bend so far and the rest of the distance will either get made up by the work you and your child do or at times the distance simply remains there and with a sad acknowledgement you realize you may have to try to close that distance sometime in the future. Perhaps your child just was not ready quite yet to attempt that skill or task.
I say the above because something that we have been working on with Elizabeth since she was three years old is how to act/behave in public. Be it with peers or just if she and I are headed to the store for milk. All those times are out in what I call public, even our backyard is “public” especially when a neighbor stops by to talk a bit. I remember dramatically pointing out the difference between “private” and ‘public” by going in and out of our front door about 57 times. It was always such a challenge because with Elizabeth and her Dyspraxia, the processing of information from short term memory to long term memory is difficult. So what you go over with her, the dos and the don’ts:
- Please do not interrupt the person talking, wait your turn
- Please try to make eye contact
- Please try to answer ONLY the question asked (I will get back to this one later)
- Please keep hands down, not in “high guard” (I will get back to this one later too)
… can result in one of the four being remembered as you may hear her tell the neighbor that she had fun at the pool, but then she says she is a pretty girl who is 14 years old all the while with her hands in the air near her shoulders (high guard posture). We see this when she is anxious or over-excited … Well, sure, all that she said is true. At the time she WAS 14 and yes she IS beautiful but that was not the answer to the question asked.
So yes, the struggle for us has been and truthfully, continues to be, the ability of Elizabeth to process what is being said in a conversation, to stay on the topic and to find the words and be able to say them in response, all in rapid succession. This is a tall order for dyspraxic children especially since her Sensory Processing Disorder (SPD) can produce enough anxiety to make any of the above steps – steps she has done when calm – undoable. I also think it is a tall order for many neurotypical teenagers as well as the art of conversation is being lost under a sea of text messages (but perhaps that is a blog for another time).
So, now that you know the struggle, you are probably asking what we have done so far.
I will tell you the key player in our successes has been TALKING.
We started talking to Elizabeth about social behavior long before she could even talk back. Our original OT told me that starting young will make all the difference in the world … So starting young is what we did.
When she was non-verbal, we used:
- pictures with emotions on them to help her tell us how she felt in situations then we could talk about it
- a wipe-off board to draw pictures with simple words
- a reward system for behaviors we wanted to strengthen (we used chocolate when she was little, she is so much like her mother!)
- longer sentences on the wipe off board
- a more advanced emotions chart
- we typed up a list of topics and interactions to practice with her (both positive and negative ones)
- … and we started talking!
- before we go somewhere to help her anticipate what she will be encountering
- before we go about things she can say to people, topics that are appropriate for conversation, topics not so appropriate for conversation
- during the time we are there to help remind her of the things we talked about before
- after we are back home. Here is where we talk about the positives and successes and the things we will try to do differently next time.
I find myself so much in the habit of the above steps that I do them without even thinking. But I do try to keep the talking in line with what would be considered typical for her age group. Meaning, even though she has trouble with expressing all thoughts, she still feels them as any 18 year-old would. So we try very hard to recognize and respect the age she is.
These conversations be them before or after can elicit great words and feeling from this child. I love the times when it is just me and Elizabeth talking. I love getting the chance to hear what is inside her, her feelings and emotions and even how she thought the outing went. I am always so pleasantly surprised when she will say something like “Well. I thought I did a great job today, but I probably shouldn’t have told that man my age. Right Mom?”
So she knows, she gets it! But her disorders are tough and they show themselves so strongly some days and near to nothing on others. But as with all special needs children, everyone is different. In their needs, likes, dislikes, abilities and challenges.
For us, we know how Elizabeth “works.” As we have had 18 years of our journey. But just because we know how she works does not mean that what we do now will work next month/year. You always have to be ready to change and adjust what you are doing. Be ready to re-evaluate and make new plans. But the thing to take away is that ANY work you do will help your child when the world just won’t bend that last little bit for them and isn’t that what your goal has been all along?
I would be happy to answer any further questions about what we did @ firstname.lastname@example.org
I wish everyone a blessed month and as always … our journey continues.
Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.