The iMums are proud to celebrate Better Hearing and Speech Month #BHSM and publish the following article from a parent who was concerned about her child’s development. We hope that if you have concerns about your child, you will consider looking into early intervention to help them. #earlyinterventioncounts
As a parent, you often find yourself asking questions. Is this normal? Should my child be doing this or that. I know that I am guilty of that too, I watch what other children are doing and often compare my toddler to others. For example, my son uses an open cup to drink – does yours? When do you know as a parent that something might be wrong? Often as parents we turn to others as trusted advisors especially if we are a first time parent. We may suspect that something is wrong – for example Johnny isn’t walking yet, but Ben is and they were born within a week of each other. We might consider asking our pediatrician for advice, some will tell you that more time is needed as there is always a “range” of normal or we might turn to other parents who might be able to offer advice as well as looking at websites about when milestones should be reached.
What if – deep down inside there is a voice telling you that perhaps something is not right? Here in the United States we are extremely lucky to have a program called Early Intervention. The initiative sponsored by the federal government and local state governments is a system of services designed for children from birth to age three who may have developmental delays or disabilities. The program helps eligible babies and toddlers learn and master basic skills which are developed in the first three years of life including: physical skills (rolling over, crawling, walking); cognitive (problem solving, thinking); communication (understanding what is being said, talking); social/emotional (ability to play, feeling secure) and self-help (eating and dressing).
I have an older child who went through early intervention due to multiple developmental delays and has seen great success. When I noticed that my younger didn’t seem to match up with other children at his daycare in terms of skills like sounds (babbling and garbled), he didn’t like new textures when eating and he reached some of his physical milestones later than others such as sitting and crawling I knew deep down inside that it was time to contact Early Intervention to make sure that I wasn’t missing something. I had talked to my pediatrician about this – she had assured me that there was a wide range of “normal” and I was simply comparing things to my older son who had multiple developmental delays and that he would “catch up” after all he was born a little early (36 weeks) and it was okay to be behind.
Another fear of mine was that my son would be “labeled”. Honestly, having a label of delay or autism can be the difference between your child getting the services they need versus not getting them. Waiting until they are significantly behind others means that they will have to catch up in so many more ways.
Deep down, I knew that something was wrong. Today, my son was evaluated for early intervention and today I learned that yes, he was significantly delayed in a number of areas. I wish that I could say it was less scary this time around than it was the first time. As I listened to the team go over the evaluation, I heard what they were saying but my mind kept going back to “what did I do wrong” or “should I have noticed something more?” The answer is – simply I knew as a mom that something wasn’t right and now I’m taking action. I’m helping my son get the services that he needs to succeed.
As a parent, you are your child’s strongest advocate. If you think that something might be off – I encourage you to talk to trusted advisers like your pediatrician, get an early intervention evaluation, talk with other parents and professionals. Early intervention made a huge difference for my older son and I’m hoping this time since we started earlier that now my younger son will make significant strides and catch up with his peers.
To learn more about early intervention, you can visit the ASHA website at http://www.asha.org/slp/clinical/EarlyIntervention/. Remember, any therapies that your child gets to help them be successful will only help them in the long run. Go with your gut and if you suspect something isn’t right – ask for an evaluation. Many times the early intervention evaluation is covered by your insurance – and knowledge is power when it comes to your child. If your child is eligible for services as mine were, the therapists will work with your child 1:1 or sometimes in playgroups to encourage mastery of skills and help them catch up to peers.
If you have any concerns about your child’s development, please do what I did and reach out to the local early intervention team in your area. Remember #earlyinterventioncounts!
When I was asked to write a piece about autism for The iMums, given that I’m not autistic I decided to share with you the only thing I am an expert on – what it’s like to parent my children.
A couple of points to note first. Autism is a developmental disability and as a non-disabled person, the challenges I tackle from time to time are nowhere near as significant as the hurdles my children face daily. Secondly, I have never once wished my children were not autistic; I adore and accept them exactly the way they are.
Bearing those caveats in mind, here are some of the things I’ve found hardest to manage:
- The administration. In order to get the accommodations, services and supports my kids need, I have had to fill in more forms, attend more meetings, appointments and workshops, do more research and learn more things than I ever imagined possible.
- The isolation. There’s a counterpoint to this so make sure you read on, but I do sometimes wish I had someone I could call and have a cup of tea with. There are parent support groups but even if I didn’t have to do a 3 hour round trip to attend one, I still wouldn’t want to sit and listen to people talking about how much autism sucks. Friends whose kids are typically developing seem to fall into two camps. First there’s the pity crowd who are “so sorry” about my boys’ diagnosis. I’m not sorry, my kids are awesome. Then there are the folks who breezily declare, “well all parents have to deal with that.” Yes, given that my children are people and not dolphins, obviously there are many things that we have in common but honestly, it’s not the same.
- Fear for their future. All parents know this feeling but autistic adults (even when compared to other disabled individuals) are much more likely to be unemployed or underemployed than their non-autistic peers. I worry about my boys growing up in a society that focuses solely on their deficits and differences. I want them to live in a world that values diversity and sees their strengths.
- When I don’t understand my kids. My non-speaking son is incredibly adept at communicating what he wants and this continues to improve as he uses AAC (augmentative and alternative communication). My other son, Oliver, is verbal but highly echolalic. I know that behaviour is communication but sometimes I struggle mightily to understand what Oliver’s behaviour means. Not having the same neurology as my children can be frustrating and painful at times.
- My boys are autistic in very different ways so when their needs come into conflict – when Oliver’s sensory seeking behaviour triggers Owen’s sensory sensitivities, for example – it’s extremely hard to come up with solutions where everyone’s needs get met.
Having said all that, there are some terrific benefits that I would never have experienced if my children weren’t autistic. Here’s some of them:
- An online support network. I have so many friends who, even if they can’t be with me in person, are incredibly understanding and supportive. I especially value the input of autistic adults who can often interpret my children for me in ways that make it easier for me to understand them.
- I’m a better person and I’m pretty sure, a better parent than I otherwise would have been. Trying to understand my children and balance their competing needs does have an upside. I’ve read books and articles, met people, written things, had to get my head around concepts and generally followed a path I would not otherwise have taken. I’ve had to exercise my powers of deduction and imagination – both in understanding my kids and coming up with creative solutions for some of the issues they face. There’s nothing more satisfying than making your child’s life easier, better or happier.
- It’s much easier to raise my children to be themselves. My kids get to focus on things they enjoy. They are allowed to leverage their special interests and areas of strength in order to develop new skills. Their education is individualized to suit them, they don’t have the same pressure to conform and they aren’t forced to wear the straitjacket of a standardized education.
- In many ways my boys are so easy to parent. They enjoy their own company so I’m not forced to feel that I always should be with, play with or talk with them. Their lives are relaxed and not over-scheduled with play groups, school clubs or ludicrous amounts of homework. They have freedom to just ‘be’ which in turn makes being a solo parent much less stressful for me.
I clearly can’t claim that this is what life’s like for all parents of all autistic children but I hope I’ve given you an idea of what it’s like for me – and that I wouldn’t have it any other way.
Deanne fundraised to acquire iPads for her autistic sons, twins currently aged 7, after hearing how beneficial the new technology was proving to be for individuals on the spectrum. She’s been addicted to iOS ever since and has now been reviewing apps for kids for two years. Deanne is a freelance writer and you can find her blog at smallbutkindamighty.com
Guest Post by Lisa Domican developer of Grace App.
When Liam was small and we didn’t yet know he had autism he used to get rampant tonsillitis.
I would take him to the Doctor, get the antibiotics and then fail hopelessly at getting Liam to take them (because he was so sensitive to taste and smell) so the infection would escalate into something even stronger and more painful.
Even with this septic mess of a throat, Liam would continue to run around and play until suddenly he would go pale and listless.
I would take him back to the Doctor only to see him CRINGE as he examined the tonsils and say
“They are VERY infected” then look at me like I was the worst mother in the world, write a new prescription and say firmly “complete the course” as if I was deliberately neglectful. I eventually found a way to get him to take his medicine (wrapped up in a towel like a cat) but it took a bit longer for me to realise that our kids do not know how to “act sick”
Everybody has a different pain threshold, and Autistic people feel pain to the same degree as anyone else. But they can be incredibly stoic and they need to be taught, step by step to ‘act” like they are in pain.
You can observe this regularly when flu goes through your house. Mums will grab a box of tissues, take a decongestant and get on with all the chores they usually do. Whereas men tend to develop the dreaded “man-flu” and take to their beds or the couch where we must bring them things until they recover. Acting sick when you are sick gets you attention and help. Not acting sick means you often get sicker. So we have to teach our kids with autism that it is rewarding to tell us when they are in pain.
You must do this in context, when they are actually feeling pain. For ethical reasons you have to wait until they trip over or get a bump that you know is painful.
DO NOT TRIP THEM OVER ON PURPOSE! Okay?
When they do, you go and comfort them immediately with a hug while pointing to the place that hurts. Say clearly “Sore knee” or “Sore Elbow, owie!
This works really well with kids that are able to imitate speech. I did this with my son Liam who learned very quickly to repeat what I said, and to tell me whenever he was hurt. In fact Liam will demand an ambulance if he gets a hangnail. I encourage this because I know when he gets a tummy ache or an ear ache, he can tell me and we can go and see the Doctor before it gets worse.
For non-speaking kids it is much harder. My daughter was a picture communicator from an early age and I struggled with teaching her to tell me when she was hurt using the same steps, so I made a visual “pain chart” with pecs pictures. As I said, you have to do this IN CONTEXT, when she actually feels the hurt. and the pain chart was a laminated A4 page with slightly gross pictures of body parts, too big to carry around. So, when she did get hurt I had to make a choice, do I run and comfort my daughter or do I try and find where I left the stupid pain chart?
Gracie had a lot of anxiety and behavioural issues as a result of her autism. But sometimes I wondered whether it wasn’t just “autism” but a real pain like a toothache or earache. I had no way of knowing and it really tormented me. Until I created Grace App.
Because, while you may have left the picture cards in a drawer at home, you always have your phone, so I made sure during the development of Grace App to include a section called “My Body”
When the pain happens, I grab the phone and select “My Body” Hand over Hand so the child is selecting the category picture with you
Then prompt them to choose “Sore”and “knee”
And give them a lot of care and attention around that poor sore knee. Saying “Sore Knee” and pointing to the pictures and the actual knee, a lot.
In a separate exercise; (when they are no longer in pain) you teach all the other body parts using flashcards or standard picture exchange requests.
How do you request a body part? Try using our friend Mr Potato Head as a 3D teaching tool.
Set up a mirror and the potato man and keep hold of the body parts. They can request “I want nose” and “I want eyes” using the phone.
At the same time do a little “show me your eyes” and prompt a nice point at eyes looking in the mirror together. So it is real, not abstract.
They will associate the picture of “eyes” on the phone with their eyes.
We often play drawing games on the iPad (or use a piece of paper and some coloured markers)
Gracie requests a favourite Muppet using her App. I prompt her to ask for each part by colour and then draw it for her. At the same time I get her to point at her own body parts and name them.
In school they make puzzles of her favourite characters and she requests each piece using the app. It is a great way to keep her interest while making sure she learns in context.
Being able to describe pain and get relief is a basic human right. Unfortunately we do not prioritise it enough for the non-speaking and our health services need to address this. My goal is to make this easier, so that everyone regardless of whether they have a voice or not, is able to say how they feel.
Lisa Domican is a mother of two autistic teenagers. An excellent communicator herself, she saw the importance of giving the power of communication to others who needed it and set about creating the Grace App in early 2010, she has since set up her own company to promote and expand it. According to Lisa ‘My goal is to engage and inform as many educators, therapists, parents, carers and service providers about the importance of independent expression. Everyone should have the right to say what they want. My aim is for them to get it! You can find more of her writing at her Living with Autism Blog.
Hi Michelle! Thank you for participating in our interview. Please tell us a little about yourself and your family.
There’s three of us – my husband works in IT, I run an online retail website and our three year old daughter is an up-and-coming geek!
Which Apple device(s) do you currently have in your household?
Two iPhones (3GS), an iPad 1, an iPad 2, an iPod Touch 4th Gen and a 21.5″ iMac.
At what age did your child start using the device(s)?
Our daughter started tapping on our phones just after her first birthday and has been hooked since then. We made the decision to purchase an iPod Touch just for her on her third birthday, justifying it as a relatively inexpensive device to maintain after the upfront costs (given the plethora of cheap/free kids apps out there!).
What are her favourite apps? More importantly, what are your favourite apps for her?
Her favourite apps would be Tozzle, Toca Doctor, Littlest Pet Shop, Angelina Ballerina (the dress-up version), The Monster At The End of This Book. She plays dozens more, even a few ‘grown-up’ apps such as Pocket God, Angry Birds and Minecraft.
I find some of the better apps for her educational growth have been any of the apps produced by Duck Duck Moose – eg. Park Math, Word Wagon – and she has loved preparing virtual meals (and thus learning many ingredients) from the Maverick Software suite of apps eg. Sundaes, Pizza.
How do you balance her technology time with other activities?
Due to my website commitments she has frequent babysitting time with other relatives – the iPod is left at home, and more often than not she gets outside for a play. She is also easily swayed to go out to the backyard for a bounce on the trampoline or to help Mummy tend the garden 🙂 I think due to the fact that it is always available to her, she does not see it as a necessity – unless, of course, she has a brand new app to test out!
And finally, what skills do you hope to see your child gain from using the device(s)?
I have already seen incredible improvements in her recognition of all letters (she can understand both upper and lowercase) and subsequently she is already writing and spelling some words on her own. I am hoping that her various story books on the iPod will help to continue improving her comprehension of words.
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