Behaviour or Symptoms?

The definition of behaviour in the dictionary is “the way in which one acts or conducts oneself, especially toward others” and “the way in which an animal or person acts in response to a particular situation or stimulus.”

The key phrase that makes “behaviour” so challenging is the part that says ‘especially toward others.’ It makes things so hard for parents, siblings, caregivers, teachers, EAs, peers etc. because we feel that it is directed at us. But imagine being the child or adult who is losing control! No one wants to feel that way.  Nobody wants to feel out of control!

I love the way Jeff Noble from FASD Forever puts it…FASD (or insert diagnosis here) is forever. Frustration is not. He also opens our eyes to the fact that behaviour is a SYMPTOM. Just changing the word BEHAVIOUR TO SYMPTOM will help you be a little more understanding and less frustrated. Because ultimately, that’s what it is! A symptom of being over stimulated, tired, challenged, unable to communicate desires, etc.

There are many reasons why a person acts out either verbally or physically. And it’s not easy. But if you are able to figure out what is causing it, you may be able to prevent it. And remember, as your child grows, they may grow out of it. With your help of course. For others, it may be a lifelong challenge, but hopefully with growth and learning different strategies over the years, it will get somewhat easier.

Here is information on what an ABC chart is.  There are links to an example of one and a blank one for you to document the Antecedent (what happened right before the “behaviour”) Behaviour (what was the behaviour) and Consequence (what happened right after). Documenting allows you to see whether the cause is ESCAPE/AVOIDANCE/ATTENTION SEEKING OR SENSORY.

There are different strategies for different symptoms. It is important to be proactive as much as possible instead of being reactive.

  1. The number one place to start is the ENVIRONMENT. What can you do right now in your home or class to avoid any outbursts. How can you make your place a safe and calming area. Can you get rid of clutter in the room and on the walls, paint your rooms a calming colour, put sharp objects out of sight, make a “calming area” with lights, bean bags, weighted blankets, noise reduction headphones, soft music/sounds, books, fidget toys, etc. For small children a box, tent, or sitting under a table with curtains to close off the world might help. A small room for older kids and adults or even a corner of a room with a divider can be a great place of comfort.
  2. The second thing I like to do with my daughter and my students (no matter how young or old) is INTERVIEW THEM. If they are able to communicate, ask them…What makes you angry?  What makes you happy? What is hard for you? What is easy for you? What do you like? What do you dislike? How can I help you be successful? What kind of activities or treats do you like? What helps to calm you down? I can’t believe how much information I receive! They know what helps them or hurts them! So why try and guess when the best information you can get is right at your fingertips? Knowing that my student just needs 5 minutes to sit quietly or needs to go for a walk to get a drink or even just go to the washroom and put cold water on his face to calm himself down makes the day so much easier than him yelling and hitting and running out of the room. You can gain so many strategies with this information! And you’re teaching your child/student to advocate for themselves. It gets them thinking about what they need. And it shows them that they matter to you. Their thoughts and feelings are important.
  3. Using the answers from your interview or observations, you can develop visuals, choice boards, reward charts, schedules, etc. to use at home and school. Communication (or lack of communication) is one of the main reasons for challenging behaviour. So visuals around the home and school are very important! There are software programs such as Boardmaker that you can purchase (ask your speech pathologist about it) or even just using Google Images. You can get photos of just about anything! Place pictures around your home. Put pictures of food on your fridge so your child can point to what he/she wants. Make a board that says MORE and ALL DONE on it so your child can point to one or the other instead of throwing their finished plate across the room. Use a visual timer to show them how much time they have left for an activity. A time timer is great because it visually shows them with colour, but you can also buy the timers at the dollar store or use an app on your phone. There are so many strategies for every challenge. It’s just a matter of figuring out what works and what doesn’t through trial and error.

If you have specific questions or are in need of help, send me an email! I’ll do my best to guide you in the right direction 🙂

And remember, the calmer you are, the easier to it is to diffuse a situation. Take deep breaths, tell yourself this isn’t personal. This behaviour/symptom is based out of fear, frustration, anxiety, needing attention, etc.

Together we will get through it! xo

 

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Advocating

Advocating can be a challenge! It is a fine line between advocating for your child and being the crazed mom who everyone tries to avoid. I’ve been on both sides of the table as a mom and as an EA. I also understand how frustrating it can be as a mom when you feel like your child’s needs aren’t being met or as an EA when you feel like you are doing everything in your power to help your student succeed and yet it just isn’t good enough. I never ever like to assume things or judge a parent for how they are parenting their children. But I do need to mention that if you are going through the grieving process or if several different teachers and professionals have told you that they feel your child should see a paediatrician, please, please,  please trust that they know what they are talking about and only want what is best for your child. As an educator, we don’t speak to parents about an issue unless we feel very sure and strongly that it will help the student.

That being said, as a parent, we need to make sure that our child’s needs are being met. When we aren’t in the school day in and day out, we have no idea what is going on and we need to trust that the professionals know what they are doing. Communication is key! Here are some suggestions to help you be in the know:

1. Communicate!! Ask questions! Don’t be afraid to discuss any concerns with the EA, teacher, principal, group home worker etc. Having consistency between home and school will benefit your child greatly.

2. Have a communication book or agenda that goes back and forth. But make sure to read and write in it! If your             child is non-verbal, provide the school with a visual schedule that the EA can go over with your child at the end of the day. They can circle or stamp the activities they have done that day.

Better yet, ask the EA if they already have a visual schedule/daily agenda made that they could send home. Many schools have the Boardmaker software that they use in the school already. This also will allow for consistency with the photos between home and school. Click here for more information on Boardmaker.

3. Request a meeting. Before school starts, a month or two after school starts, and again in the spring. And any other time you feel you need to meet in person to discuss issues/concerns that can’t be written in the daily agenda.

Having a meeting before school starts each year allows you to go over any changes the summer may have brought. Strategies that work and strategies that don’t. A lot of growth can happen in just a couple of months. Meeting a month or two into the school year will give you a good idea of how things are going and where they are headed. It is so much easier to deal with situations that arise right from the get go instead of waiting months where the symptoms or behaviour become a habit. Being proactive is much better than being reactive. Make a plan together and follow through with it!

4. Check out this website that has specific issues needing intervention. Lindsay Moir was an incredible advocate who sadly passed away and is greatly missed by his family, friends and special needs community. Scroll down to the bottom and click  ‘View ask Lindsay Archive’

5. Bring in an 8×10 photo of your child to your meeting. Tape it to the chair beside you. Any time they start talking numbers (because let’s face it, it usually comes down to money) just point to the picture.  Remind them that your child isn’t just a number. It may have been Lindsay who suggested this at one of his workshops I attended. It was pretty powerful. (I would only use this strategy if the school board and I had been trying to see eye to eye for some time).

6. BE KIND. Always be kind and thankful. No one purposefully tries to sabotage your child’s learning. No one purposefully tries to be difficult to work with. We are all doing our best. Working as a team is how your child will succeed.

There is so much more information, but this is a start. It is hard to suggest something to you when each one of you will have a different concern. If you have a specific issue that you need help with, send me an email and I’ll see what I can do.

In the meantime, here are some links to help you know some of your rights!

Learning Disabilities Association of Ontario has a Parent’s Guide to the IPRC & IEP process

IEP (Indivual Education Plan) Resource Guide by the Ontario Government

ABC Ontario has an IEP guide for gifted students

Disability and Human Rights Brochure is located here

 

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Autism

Websites:

http://www.speakingofspeech.com – This website has many many free visuals! Click on Materials Exchange to access them. There are social stories, cooking recipes, life skills, data sheets, etc. etc.

http://www.autismprthelp.com/books-and-manuals.php – This link will bring you to the Koegel Institute Manuals. They are fantastic!! Pivotal Response Training is probably my favourite way to teach GG. It is all done in her natural environment. Check out the website to learn more. This is what we used to teach her language and I was amazed at how quickly it worked (especially after trying so many other techniques).

http://asperkids.com/– an Ah-mazing woman named Jennifer O’Toole (who was diagnosed with Aspergers, along with her hubby when all 3 of her children got their diagnosis) has put together a webpage, books, and fantastic information all on Asperger Awesomeness!! If you have a daughter with Autism/Aspergers you will love this site too!  It has great information on our girls’ unique characteristics!

http://www.autismontario.com/– This website is for residents of Ontario and from here, you can go directly to your county’s chapter. Here they have information on funding, camps, activities in your area, a list of professionals and ABA providers, etc. We have signed up for their newsletter and have become a member of AO. We receive emails with activities in our area that are either free or at a great price for GG and the family. She attends a Girls On The Spectrum Group (G.O.T.S group) once a month where she hangs out with other girls on the spectrum doing anything from crafts, movies, sewing, bead making, pizza/pj party, wildlife fitness, etc.  We have also attended a weekend camp with other families and it is definitely something to experience. Every single person there is understanding and supportive!

http://www.kerrysplace.org/Public/Supports-and-Services Kerry’s Place was our Saving Grace when GG first got diagnosed. We were new to autism and the symptoms she was showing through us for a loop. A consultant from Kerry’s Place would come to our hometown once a month. We would me with her, discuss our challenges and she would give immediate feedback and suggestions. I don’t know what we would have done without that support!

http://www.abaresources.com – Another free resource site! They have visuals already made for a token board, schedule and choice board, edible reinforcers, chore chart, first/then, visuals for restaurants, places to visit in Toronto, children’s books and much more!

https://www.stanleygreenspan.com/ – Check out the free video for parents. There is a lot of great info. in the free manual and parent course. Dr. Stanley Greenspan created the FLOORTIME METHOD in the 1980’s. I used this with GG and students I work with and it’s worked every time. You basically follow your child’s lead. If your child is spinning or flapping their hands, join in! If she is rocking while watching tv, sit close to her, rock and watch her show. With love and interest. This is how she will let you in.

http://www.zonesofregulation.com/index.html – This is an excellent resource for managing feelings! They have a book that comes with a disc to print out booklets that you and your child can fill out together. We use this at home and the schools use it often as well. Having home and school using the same language makes it much easier for our kids.

http://www.templegrandin.com/templehome.html – If you ever get a chance to hear Temple speak, I suggest you do! She is an inspiration. She has written many books and invented the squeeze machine. There is also a movie about her staring Claire Danes.

http://carlysvoice.com/home/faq/ – Carly Fleischmann is another inspiration! She is non-verbal and uses her computer to communicate. I find the best people to learn from are those who actually live with it!

Books:

Building Bridges Through Sensory Integration by Ellen Yack, Shirley Sutton and Paula Aquilla – This book is full of strategies for sensory issues! It has creative suggestions for muscle tone, hyper/hyposensitivity, eating issues, managing behaviours and so much more.

Relationship Development Intervention  by Steven Gutstein and Rachelle K Sheely – Relationship Development Intervention (RDI) is a technique used to teach relationships. Most interventions including this one suggest using their strategy only but we felt we would read books and go to workshops and take what we learned and what felt right and go with it. So we used Pivotal Response Training (PRT) for speech and toileting and more, RDI for building relationships and the Floortime method for teaching her play skills. The RDI is an intervention where you hire trained therapists and parents get trained as well. We bought the book and took ideas from it. Did it help her the way a full intervention would have? Probably not. But it did help. 

http://www.tasksgalore.com/  –  These books have GREAT ideas for all sorts of skills. Check out their website and go to ‘Products’ then hover over one of the titles and click on ‘Preview’.  You can purchase these books from Parent Books as well.
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Day of Diagnosis

We chose a special needs adoption and although we weren’t sure of the road ahead, we didn’t have to grieve for our loss that so many families do. Grief is real. I’ve worked with so many children whose parents are still grieving years after their child’s birth. This is normal. You have to go through all of the stages. And although I’ve felt a smidgen of this, I haven’t dealt with this side of things. So if you are comfortable commenting below with your story if you feel it could help just one family, please do. Also, check out this letter written by Emily Perle Kingsley titled “Welcome to Holland” that may give you some comfort!

Our Story…

When we first left the doctor’s office after receiving G.G’s autism diagnosis, I remember feeling relieved to finally have a path to follow! It explained so much and now we had direction.

Driving away from the doctor’s office we thought “OK! Now what?!” The doctor provided us with some information on government resources and pamphlets and that was about it. Don’t get me wrong! She is a phenomenal pediatrician!!! She did a wonderful job with G.G. during her assessment and took the time to answer any questions we had. The problem was, I didn’t know what questions to ask! I had worked a little bit with a child or two who had autism, but if you’ve heard the term, “When you’ve met one person with autism, you’ve met ONE person with autism.” It is so true!! As much as many people diagnosed with autism share certain characteristics, they are all extremely unique! We didn’t know what to expect, what the future would hold, or what all of our needs would be! And I mean ALL – G.G., hubby, her brother and sister and myself. So please keep reading my posts! I will share our adventure, provide you with some strategies & resources that you can start with right away and links to help your whole family live a Well Balanced Life!

Let our journey together continue! You are NOT alone!

xo

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Diagnosed! Now what?!?!

Gracie’s first diagnosis was autism so that is where we are going to start. For those of you who have a child with a different diagnosis, check out the resources page for something that may help you there. Also, keep reading this post, because you never know! Something might be of use to you here. If you still aren’t sure where to turn, send me an email at wellbalancedlife@rogers.com and I’ll see what I can do!

First thing’s first, take a deep breath! Know that there is a TON of support out there for you and your family! I will do my best to let you know about all of the freebies out there.  You should qualify for a disability tax credit which can help out with some therapy and resources also.

Here are some links to the Ontario Government website that can answer many of the questions you may have. The menu on the left has a list of options for those with another diagnosis.

Next, get your child on the wait list for IBI (Intensive Behavioural Intervention). You can actually get your child on the wait list if there is suspicion of autism. IBI is not for everyone and not everyone qualifies. But it is a long process to get to the top of the wait list so you might as well get started now. If your child doesn’t need IBI therapy by the time they call, great! You just let them know that your child doesn’t need their services. If your child does need it, well you will be happy you put them on the long wait list! No harm done planning ahead! Here are some FAQ from the Ontario government website on IBI. To get your child registered click here for more information. Your child needs to be referred by a physician or psychologist so definitely ask your doctor/pediatrician about this! Once you are on the list for IBI services, you may be provided with support while you wait.

There are several support systems in your own community. If you are not sure, ask your doctor. They should have a list of contacts for you to see.

Remember, as hard as this can be, you now have a path. Some sense of direction. Learn all you can. It is a community like no other so try and find other families who have been down the same road.

That’s what this blog is all about. To let you know you are not alone! Together we will see the exceptionalities and wonder of our children. And together we’ll get through the tough times.

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