Thursday, March 3, 2016

Self Regulation

Dealing with emotions can be so hard for our babes on the spectrum.  Helping them understand what each emotion is and offering some coping strategies is one of the biggest gifts we can give them.  Understanding emotions in critical with helping their social skills and with self regulation.

Self regulation is basically the ability to calm yourself down and to recognise when you need to.

Maddy did a 6 week self regulation course in late 2014 through her speech therapist.  It was conducted with a group of 4 girls around Maddy's age and they learned different techniques each week.  It gave her a small insight but it helped me greatly in knowing what I could be doing as her mum to help encourage this.

Maddy's emotional age is between 4-6 years of age (she is 9 years old.)  My neurotypical son is 5 years old and the techniques I use with Maddy are also fun for him too.

While on Pinterest (a.k.a the bible) I stumbled across an amazing blog Teach Mama which had a brilliant FREE printable for emotion activities based on the movie Inside Out.   I quickly printed the cards out and I wrote on the back of each card some strategies for each emotion tailored to Maddy specifically.  for example a strategy for Anger was to take 5 deep breaths, count backwards from 10, sip on some cool water, punch her punching bag, eat some crunch foods.  I also added a new emotion jealousy as that is something she really struggles with.  I laminated a set for a key-ring for her and I also made a set to play memory games etc.

If you haven't watched the movie Inside out yet, I strongly recommend it.  Make sure you watch it with them so you can look for talking points for later on.

Talk to your kids about their different levels of emotions.  Draw a scale or thermometer and write down with them or draw if they can not read how they look or behave when they are 'cool' or 'calm' then work your way up the scale/temperatures.  Mark on the scale where they think they need to implement their calming techniques.

We are no strangers to calming techniques in this household.  Some that I would suggest are:

  • crunch foods
  • jumping on a trampoline
  • jumping into a crash-mat
  • meditation/calm music
  • a shower
  • ear muffs or eye mask
  • talking it out
Each technique would be used in different situations and its best to use your discretion when suggesting what would suit the scenario best.   For example: trying to get a child to 'talk it out' when they are seeing red would probably not help at all, that's when calming senses is needed.

For a small calming boost I have lavender oils on her pillow and around the house too.

I'm Back!

I’m afraid I have been a terrible blogger.  When Maddy received her formal autism diagnosis 18 months ago it was like I fell down the rabbit hole.  I became so consumed in research, therapies, and basically just attempting to cope through it all that the only blogging I have really done since then is all in my mind.  The funny thing about only blogging in my mind though is that no one can actually hear my thoughts, so now, I promise to you all, I’m going to do my best to attempt to actually type it out to share with you. 

For 18 months now we have been essentially stuck in survival mode as Maddy’s development continued to regress but regardless of the bloody hard time we have been having, I will still endeavor to show you the brighter side of special needs.  

Maddy's complete diagnosis now is:
Autism Spectrum Disorder (level 2)
Opposition Defiance Disorder
Sensory Processing Disorder
Anxiety and Depression 
With her unique diagnosis comes very complex treatments making sure one doesn't contradict the other.  Each special needs child is different from another.  What I try/do for Maddy will not necessarily work for another however our experiences may inspire some ideas for your family.

During my time away from this blog I have learned so many great things through trial and error, (more) research, and from our incredible specialists so I will start sharing those things with you all too! 

Saturday, January 4, 2014

Happy New Year!

The Holiday season is done for another year and I’m curious how everyone with special little ones went with it all?  As usual I prepared for the worst but hoped for the best.  School ending for another year was much like the previous end of year where my little Maddy was left a blubbering mess.  She hates goodbyes with anyone so the thought of year 6 kids (even though she was in year 1) leaving was just all too much for her to handle.  Luckily she had her lovely teacher hold her hand through the tears at the farewell ceremony went ahead.  Standing back and watching makes me feel so helpless but I am thankful that she was looked after.  Several teachers and students held Maddy as she watched the year 6 kids walk through their final goodbye at the school.  We had to spend the rest of the night at home being as un-stimulating as possible.  We watched TV quietly in the dark.  Her puffy little eyes tugging at my heartstrings as it’s never easy to see them so upset about something that you cannot control.

Between the last day of school and Christmas was spent wrapping up the years sporting activities, which she coped well with.  No more tears thank goodness! We did wrap up cricket for one last time though so it was sad to say goodbye to her one and only team sport but this year it became evident that she really can’t cope in a team environment.  She was having increased melt downs and refusing to join in so instead we will focus on her other strengths such as her private tennis lessons where the focus is all on her.

Christmas its self was good, no melt downs but at times she needed to have some alone time when it was getting too over stimulating.  Maddy volunteered with me to feed the less fortunate and she blew me away with how well she handled it.  There was only a brief time where she wanted to sit alone and play on my phone then she suddenly was the life of the party.  She cleared the tables of over 150 people, read them jokes from bonbons over the microphone, and made herself known to everyone there by the end of the day (I’d say some sugar fuel courage may have helped from all of the chocolates given to her!) by the end of the day she was definitely seeing stars from the extreme diet change and did have one accident but aside from that, she handled what is usually a hard day for ASD kids. 

After Christmas we went on a holiday to the Gold Coast.  A much needed break from reality and we were helping Maddy to visit her grandparents who were also holidaying there.  The thought of a 10+ hour drive was really weighing on Maddy during the months leading up to it so luckily a family member purchased plane tickets as a very generous Christmas gift to us.  She was perfect on the plane (which she always has been) and was thrilled to be in a new exciting place but after a few hours the over stimulation became too much as she spiraled quickly into a melt down that kept her in a depressed lull until the evening.  I hate seeing her like that and I felt even more helpless being in the hotel room, not wanting to alarm the other hotel guests and wanting to make Maddy feel safe and secure in a very unfamiliar environment.  A soak in the tub and some quiet time thankfully brought my Maddy back to me and we then got to take her out for dinner with an old friend of hers.  The lovely staff at Hark Rock Café in Surfers Paradise were so lovely that they even turned the music down for Maddy so that she could enjoy her time there.  We then enjoyed a lovely few days with her, the only help she needed was that of her earmuffs when the sounds got too distracting.  She wore them for almost our entire visit to Dreamworld.  I’m so thankful that we were able to make some lovely holidays memories.  She then got to have a few nights with her grandparents where she continued to cope well.  The beauty of unfamiliar environments is that they are so distracted that they often don’t melt down like they would at home or school.  The fuss being made over them by loved ones and new friends to make also keep them going.  I think this is where Maddy having ADHD also serves as sort of a blessing because she is always raring to go so if she is kept busy with new experiences and new faces, she handles things better.  I was nervous how she would go with the banging of the fireworks but I was told that it wasn’t loud where they were and more of a cooking popcorn sound so thankfully Maddy was fine. 

The flight home went well, her only issue was in the bathrooms at the airport having the hand dryers go off but that is to be expected.  Now that we are home from holidays the focus is to get back into Maddy's additive free, clean diet and get her back into her daily routines.  She is slowly but surely getting there and I am truly grateful that Our Holiday season went so well.

Remember If you are planning a holiday with your special little one, try to be flexible while tying their routines in as much as possible.  Lose your expectations of what the holiday should be to avoid any disappointment.  I didn’t hold any hopes for my trip (aside from the weather!) and I’m glad that I didn’t because I ended up really enjoying this time with my daughter.

Now we are all home, including my son, and we are so happy to have the 3 of us back together! I hope you all had a lovely Christmas and remember to see the brighter side during your 2014.  My new years resolution for Maddy would probably be to raise more awareness about her disorders and more acceptance of it from those close to her. 

Wednesday, December 11, 2013

The Weight of the World on your Shoulders

Many of you may have heard of weighted cushions, vests, and blankets before.  They are a great calming tool for many kids on the spectrum.  Here is a simple DIY project of how to make your own weighted cushion:

What you'll need: Fabric of your little ones choice, calico or another strong fabric, rice (I used 3kgs), and patience for sewing! 

Step one: So that this can be made to your own specific size, lay out the desired weight of rice along the calico so you can use that as a base for your measurements.  I felt 3kgs would be a good weight for Maddy so that's what we went with (you can make this as big or as small as you desire - within reason of course!)

Step two: Sew up the end of the calico twice to ensure none of the rice sneak out!


Step Three: Fill up the calico bag with the 3 kilos of rice or alternatively to keep the rice spread out evenly fill with 1kg then sew a line to divide and continue with the 2nd and 3rd kg bags of rice sectioning off between them also. 

Step Four: Once you have secured the rice in there with the most extreme end stitching you can do, lay it flat on the table to measure the cover fabric.  Ensure one of the sides of the cover fabric is slightly longer so that you can achive a 'pillow like' close when the cover is put on.

Step Five: Admire how cute it looks!

I decided to make 2 separate covers so that we can remove and clean if there are spills etc.  This also meant that Maddy got to choose more fabric which she will never complain about!

Here is our second cover
It is recommended not to exceed 10% of your child's body weight when getting them used to weighted therapy (which is why I chose 3kgs for Maddy.)  They should use it during such activities like: Start of the day, during written work or homework, during stressful activities (base this on what you child feels anxious about whether it be meeting new people or doing the shopping), at the end of the day, during special classes such as music or art. The time shouldn't be more than an hour and there should be at least an hour break in between uses. 

The weighted cushion that I have created here is suited for Maddy to use at home or at school.  I designed it to be long because I intend to use it three different ways.  The first being when she is laying down on the couch with her feet up and the cushion on her lap at the start and end of the day, the second is on her shoulders when she is feeling anxious, and the third is across her lap when she is sitting at her desk at home or at school.

** Disclaimer** These weighted cushions should be used with direction or advice of a therapist, and should only be used while under adult supervision - in case you didn't already know :)

Sunday, December 8, 2013

What to avoid when shopping for someone with special needs this Christmas

As a parent I am always so incredibly grateful when someone buys one of my children a gift regardless of if it is bought, if it is made, how much it cost, where it came from etc.  The point is, giving a gift shows you care and that is something I am always thankful for.  Unfortunately there are times where a gift is given to my daughter (ASD, ADHD etc.) and it secretly makes me cringe because I know exactly what’s going to happen as a result (for example, paints or colourful pens will result in a mural on her wall or clothing, a craft set will be broken to pieces and/or eaten etc).  Regardless of me having to usually take these gifts quietly away, we are still grateful for the thought and effort put in.  To avoid these situations I have come up with a short list of what to avoid, and then another list of suggestions of what would be great to give this Christmas!

Try and avoid forcing an age appropriate gift onto a child who may have younger interests.  My daughter collects lalaloopsy dolls which are seen as preschool age toys (which makes it incredibly hard to find her lalaloopsy clothing  and dress-ups in her size.)  She is 7 years old but it is not uncommon for children with ADHD and/or ASD to be roughly 30% behind in their maturity levels.  This may mean a high schooler may still be interested in Barbies or Thomas the Tank Engine.  If this interests them, just go with it.

It is best to stick to the real thing instead of imitation brands of toys.  I know we all like to save money where possible but if an ASD child is collecting Barbies or Littlest Pet Shops or My Little Pony etc, they may become anxious by something not matching especially with their sensational visual memories.

Toys that really put a strain on their fine motor skills.  Unless the parent has specifically mentioned that they need something to help work on those issues, its best to not get things that are too small and fiddly.  For example, perhaps buy duplo instead of lego unless you check with them first.  While lego may be great to exercise their fine motor skills, it may cause tension and take the fun out of playing.

Stationary – I can vouch for this one personally. textas, paints, pens etc are such a difficult thing with my daughter.  She has painted carpet, used permanent marker on walls, drawn all over furniture, clothing, and toys.  I have kept all of my stationary under lock and key for the past few years for this reason but it makes it very difficult when it is given to her as a gift.  All it takes is 1 minute for this sort of thing to happen (my daughter would strategically wait until I visited the bathroom before she would launch a drawing attack.)  As a really nice substitute, pretty writing paper and pencils is an excellent alternative.  I should also add to this that buying rubbers/erasers isn’t always a good idea also, my daughter who suffers from Pica eats them quite happily.  I am sure that many children who mouth objects would probably also eat them too. 

Another toy fallen victim to a pen attack - this is after scrubbing with gumption!

Following on from the toys that put a strain on their fine motor skills is bikes. Gross motor skills - Bikes are a brilliant gift but please lower your expectations as it is a skill that many special needs kids may never be able to acquire.  My daughter is just not getting the hang of riding with training wheels and we have learned to be calm and patient with the entire situation. Perhaps in the meantime try something a little easier like a scooter if riding a bike is too hard.

Ok now on the flip side here are some suggestions for families and children with special needs:

-       Sensory toys (there are loads of Occupational therapy websites to buy from)

-       Trampoline or mini trampoline

-       Babysitting (it doesn’t cost you a thing and the parents would be forever grateful)

-       Writing paper and pencils (as mentioned above)

-       Toys appropriate to the child’s interests

-       Offer to take the child to the park for a couple hours (this will not only give the parent a break but will be a great gross motor skill exercise)

-       Bring a meal over for the family so that they can have one less thing to worry about for a night

-       Calming music and/or headphones

-       Swiss ball (exercise ball) can be used as a chair and for OT – purchased cheaply from kmart or other department stores.

The list of possible sensory toys/aids is endless and add up to be quite expensive for parents and carers so to have one given at Christmas time would not only help the child, but the parents too.  I hope this helps in some way with your Christmas shopping this year!

Wednesday, December 4, 2013

Clean Up?

House work & Special Needs (they usually don’t go hand in hand!)

I’m curious how everyone deals with delegating chores to children with special needs.  Is there a good amount of responsibilities to be given or should we just take care of it so they do not have to worry?  Obviously each child with special needs has different abilities with what they can and cannot do. 

I was your typical ‘normal’ child growing up and I had a huge amount of responsibility on my shoulders from a young age.  In kindergarten I could pack my own school lunch, vacuum, iron etc. Because of this I often fall into the trap of thinking “But I did that at Maddy’s age, why can’t she?” Well derrr Jacqui, she can’t because she literally can’t!

My daughter is 7 and she has one main job, which probably gets achieved 75% of the time.  That is to unload the dishwasher each day.  It’s something simple enough to focus on in an area of the house that doesn’t interest her enough to be distracted.  She gets paid for this, 10 cents x her age (she is 7 so gets 70 cents.)  When she finished the job it gives her a sense of worth and accomplishment despite how difficult it sometimes is for her to do it.  As her disabilities have worsened with age (as it matures) her ability to do regular jobs has diminished.  A year ago she was able to make her bed each morning, now it reduces her to tears because of the frustration caused by not getting the sheets and blankets right, or the pillows wont sit correctly etc.  Cleaning her room is a once every blue moon occurrence now and I have come to terms with that and simply made the job one of my own.  I will sometimes spend hours cleaning up after a melt down and within half an hour she will have it back to a bombsite! 

Cleaning a bedroom for a child with ADHD is near impossible.  Something I didn’t realize for many years and thought my little princess was just lazy!  The room is filled with a million distractions (this also doesn’t help with the over stimulation for ASD littlies also.) Picking up a book to put on the shelf isn’t a one step process.  The book must be read or looked at first, then that will remind them of something else that they will get stuck in to, forgetting that they are in the middle of packing away.  Bit by bit I have had to put many of Maddy’s nice things away in packing boxes for hopefully when she is a little older.  I moved most of the books out of her room (this was also to protect the books since she discovered ripping was a lovely release in a melt down!)  I sorted all of her toys by type into clear storage tubs which stay in her wardrobe (which is locked with a padlock) so when she wants to ‘play’ she can select which type of toys and that tub comes out, another tub can not come out until the last one is packed away.  Despite all of this organization (which I thought was genius) she still manages to completely mess her room each day! Did I also mention that her drawers are also pushed into the wardrobe to stop them from being emptied daily? So basically her room is still an organized mess, she finds it comforting, I find it stressful haha I am fortunate though in that my son has a beautifully clean room at all times and appreciates my pack up rules – I guess I should enjoy that until he becomes a teenager! 

My happy place, My sons clean room on a normal day!

If you are currently going through the stress and anxiety of getting your special needs child to do more around the house, this simple piece of advice from one of my daughters specialists completely transformed our attitudes about her responsibilities “Pick and choose your battles.”  Basically, is it worth fighting for hours on end, countless melt downs and break downs, or should you just lead by example and get the job done yourself and show them what its like to take care of your responsibilities and to have pride in your home.

Tuesday, November 12, 2013

Chocolate Push-ups... Wait, what?

Another fun visit to Maddys OT today.  It is easily Maddys favorite day of the month!! Today we focused on Maddys strengths that need improving, this was brought up by me asking about what could help her improve her swimming technique.  As most special needs kids are, My little princess is obsessed with water! She loves swimming in a pool or the beach.  There have been several occasions where she has jumped fully clothed into the Nelson Bay Marina (much to my horror! - but the silver lining I suppose is that she didn't strip off first!) It took several attempts to find Maddy a suitable swimming instructor, one that knew how to reach Maddy to be able to actually teach her.  For the past year she has been going to an amazing woman who is very stern but nurturing with her students and her teaching techniques had an instant effect on maddy.  Although she loves it she struggles a lot with any sort of technique because of the lack of ligament support in her arms as well and her muscle tone.  When you watch her swim free style her arms look like very heavy stands of wobbly spaghetti (and I mean that in the cutest way possible.)  Still, she never gives up trying through each lesson.  

Our lovely OT Anna helped with some exercises to strengthen her arms, back, and shoulders (and core of course.)  Maddy's favorite exercise from today was easily the 'Chocolate push-ups' which was an ingenious idea! Pop your little on on their tummy on the floor then they lift themselves up, make sure they don't have their belly button sinking to the ground, you want a straight back to engage their core.  Then place a plate of chocolate powder, milo, hundreds & thousands etc under them.  As they lower their push up they pick up the treat with one lick with each dip.  We aimed for 5 push ups but Maddy was more than happy to do over 20 to ensure all of the plate was licked clean (that's my girl!) Doing 5 of these each night will strengthen Maddy enough to see an improvement with her swimming strokes.  We decided that we could also do this with frozen yoghurt, sorbet etc so it can be done each evening at the way of eating desert!