by Ruth Usher
Didn’t you have the test? Not that it’s any of your business but if you must know, no I didn’t! And my reason for that is because prenatal testing would not show me HOW FREAKIN’ AWESOME she would be, it wouldn’t tell me how smart she would be, how quickly she will learn things nor how she will sit on the couch and laugh at the funny things in Peppa Pig before she’s 2. This girl loves and knows love, again not testable and it definitely wouldn’t tell me how she would complete our family. It wouldn’t tell me how she will light up a room every time she walks into one, how strong and independent she will be or how much she would add to society. Yeah you read that right, my child with Down syndrome contributes to society! In a world where it’s hard to…
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It’s been a tough few weeks, admittedly we were expecting this moving into more active therapy season and meeting new people; but it sucks all the same. My princess is tired, anxious, and generally fearful which in turn affects her sleep patterns and relationship at home. Mum and Dad understand this and gives ‘the princess’ the space she needs and home life on the most part is safe and okay. It’s accessing the community that has been a struggle. We get both extreme’s, Jenna want’s to explore Kmart’s toy section and local parks but beyond this its very painful for us to venture out. This is proving to be a difficult task with 3 other children with their own interests and schedules but we always find a way and solider on. When given the time to be alone, run and play the next few hours are fantastic so we have adopted a model of support for Jenna to assist to ‘recharge her batteries’ so to speak. We have personally become acquainted to every park in a 5km radius from home (we know every jungle gym, swing set, spiders web and how to get there multiple ways). Although my princess is unable to articulate which park to go to, we eventually make it to her chosen destination and the unwind begins. Dad has learnt some cues to assist with finding the right park (we have been known to go to 6 parks in a row until the find the perfect one). I look out for grunting sounds, frowns, smiles, the amount of people at the park and presently does it have bars to swing on. Scaffolding although a great help most of the time for us doesn’t work here, I can’t seem to find the correct words to assist Jenna precisely express what she needs. The parks help although we are still experiencing at times very violent meltdowns, sickness, numerous fights with siblings, and an inability to explain what’s happening to her. We still are having difficulty with very public outbursts when we are needing to end an activity. As most kids with ASD routine is very important to Jenna. We are learning that it’s not the routine that we established that is gospel. It’s the routine that Jenna has understood, this has been a hard lesson to learn. Although a tough time has been had by all we have learnt that this is part of what we need to do as parents and as a family. We need to constantly teach our other children to work through the problems of the day, meltdowns and harsh words, explaining that at times this is Jenna. It’s Jenna not because she is a rude girl, she doesn’t really hate you and mostly she really cares about you. We have bad days because we have trouble understanding what Jenna is trying to say to us. It’s easy to teach, discipline and model the correct and expected behavior for our own family. Although we have been really taken a hit this past few weeks from others (mostly complete strangers.) We can teach others, work on models of support to reduce behaviors, but I am coming to the realization that some people I meet have the wrong idea or end point for these tools. These tools aren’t to make my life easier, they aren’t even there to help the school system or the local supermarket. We invest our time and money to see our Jenna reach her potential. We work damn hard to up-skill her so she can succeed, make friends and have the life she chooses. These tools are for her. We are working with tools, strategies and various therapist to give my princess a chance in this harsh world. A world that doesn’t seem to understand and for the most part want to educate themselves. I am finding that the adage that ignorance is bliss fits well. I am the person that usually takes it all in my stride, keeps on keeping on, etc. but…… As I already stated, we have had a rough few weeks with our princess. So with this in mind please allow me a little licence to vent my frustration…………..
- Yes it’s hard
- Yes I get embarrassed
- Yes, I wish I could go on more family outings.
- Yes, I feel for my 3 “neurotypical” children sometimes
- Yes, I want to chastise my other 3 children sometimes
- Yes, I love her to bits and will fight anyone that wishes to limit her
- Yes I hate you looking at me in horror and at her in disgust
- Yes I know she is making a loud noise and disrupting you
- Yes it’s okay for my 10-year-old to play with “little kids” toys and equipment
We have recently spent the weekend away, the world wasn’t overly kind to us so I thought I would “apologize” to some of the looks, comments, and arrogance we experienced over the weekend.
- I’m sorry that I brought her out in public
I could lock her away if you prefer but I for one think she adds life and zeal wherever she goes. She lights up my world and if given a change she could do yours. Please stop for a second and realize that she is NOT different, naughty, or a nuisance. She is a 10-year-old beautiful girl finding her place in this world.
- I’m sorry that it’s important for us to expand her capabilities
Yes, I will continue to go out for dinner, explore the unknown and try new things. This will cause all parties pain, often, but every now and then….. eureka we struck gold and a new place we can venture is found.
- I’m sorry that you don’t understand or want to understand autism
If you asked me I would take the time, stop and explain the complexities of ASD, ADHD and anxiety. The dirty looks, shaking heads, stares and laughter don’t help. They make my daughter more anxious, it makes her feel naughty and bad. It makes the hard work invested feel worthless and as for her parents self esteem, well….
- I’m sorry that I break the rules sometimes to meet a sensory need
Yes I break the rules!! I manage risk, and ask myself, do I need to follow the social norm and some printed rules. Yes this is intentional, No I don’t need you to remind me I’m doing it. Again I am happy to explain autism to you.
- I’m sorry that your needs are more important than her’s
My whole existence is to ensure my families success, at times that will mean that my princess makes too much noise in public, she will be inappropriate. More often than not I will get it wrong and make matters worse, sorry I’m new to this. But that my families drama and we are working on it J. We are trying to give our princess the best possible life, and where possible re-create the “norm’s” for her. We want life to be normal for her. That is a normal that makes sense to her. I can guarantee that this is not the same normal as mine and should not be the same as yours. We will find a solution and Jenna and my other wonderful children will grow up with permission to succeed and the supports in place to help when they don’t. As I have stated in previous posts I wouldn’t change this for the world… but to the cranky old duck on the Gold Coast this past weekend, if you would like to pay my medical bills, medication and therapy sessions to assist my princess, it would be my honour. (tongue firmly in my check)
Short post tonight…
The little things , thank God for the little things…..
- Eating food at her request.
- Going to bed at the pre-arranged, agreed time.
- 1:1 time at the park.
- Hanging out (even just for a minute) with her sisters.