Monday, October 22, 2012

Changing Autism in Our House!

Many autistic parents I know, discourage having pets in their family. I fully ENCOURAGE them. In fact, in my daughters life, we have had cats, fish & hamsters. The first cat was seriously ill and had to be put down when she was 18 months old. She still remembers him to this day! When she was 3 we got another cat as a gift to her, then last year when she was 4, my hubby decided another cat was a must. In December of last year my daughter was given a hamster for a gift....the second cat (hubby's cat, which I can't stand!), killed it. We replaced it......the cat attacked the hamster and it had a heart attack. Third time's a charm right? Nope, the cat ATE that one! We gave up on hamsters. We've had fish off and on for a couple years, never had problems with the cats and the fish. But eventually the chinese fighting fish died. No clue how that happened.

Insert this past week. We took our daughter to the humane society and let her pick out a cat. Our current cats are OUTDOOR cats. They both were before we were given them, so we just kept it that way. It was far more easier, then trying to make outdoor cats indoor.

This newest addition, has deformed pays. In total shes got 14 extra toes and claws! To many its weird and disgusting, to my daughter, she's just extra special. like her :)

Other changes in our lives, that have seemed to better my daughters life? We enrolled her via a scholarship, into a music program. She will learn to read sheet music, play various instruments properly, sing, etc (she plays at home and is very talented but this will be professional training!) She will take part in public events, including tv, radio, newspaper and appearances at places like the mall, etc. And she will take part in concerts!

Soccer! This summer was her first time taking part in Futsal (a type of soccer). She did awesome and loved it! So, when she asked to take part again this fall, we had a family member offer to pay for the registration! She loves it, and best of all, I am there for it ALL because I am her coach! I love it!

Keeping my daughter in some activities but not over loading her schedule is working really well for us this year. She's in SK (senior kindergarten), so she DOES have homework Monday to Thursday. Written, drawing, verbal and reading homework just to name a few!

I don't want Autism to define my child in a bad way. I want her to define Autism in a new and good way! By showing people that just because she's Autistic doesn't mean that she can't do ANYTHING she puts her mind to!

Yes, my daughter has a great deal of struggles, but certain things she excels at and to me, that is the most important things to encourage! It makes her feel good about herself when she exceeds at what she does and feels good!

This summer she earned 2 soccer medals and 2 swim medals, a couple running ribbons & more! To me, for a 5 year old in 2 months, that is AMAZING! Especially an autistic 5 year old!

In our house, we are CHANGING Autism!!! We're defining Autism our way, not letting it define HER!

Monday, August 27, 2012

Homework corner

Today's the day!! We have 9 more sleeps till school! Hubby is off today, so we are setting up a new homework area. My daughter has a GORGEOUS desk that matches ALL her gorgeous bedroom furniture. My daughter has a child's dream bedroom---gorgeous matching bedroom set in lavender and white, a huge mirror with a sitting area attached to her dresser (so totally princess worthy), she's got this gorgeous child sized little comfy chair and a book sling in her reading corner, she's got toys out the wazoo! (Can you tell shes the only child, niece, grandchild, great grandchild and the only female grandchild on my MIL's side). She's got a dresser and closet full of the clothes she needs (now that I did her back to school shopping lol). Her furniture includes a gorgeous bed, a night stand, a princess worthy dresser with mirror and sitting area & a gorgeous desk with a hutch for storage and decoration. However, I am a strong believer that homework should NEVER be done in the bedroom. Plain and simple. Whether you do it at the kitchen table, in an office, in a corner with all your supplies and a little table, at the library, wherever.

So todays the day that we take the desk out of princesses bedroom and put it in our bedroom! Last year in Junior Kindergarten, she had some homework but not much---flash cards, reading book with assignment once a week--that did start till January for the JK kids, but the SK's start it in September. Plus the SK kids get a lot more homework. That's why, we decided that this year would be the year to start the homework area. A calm, quite room, where she can do her work, keep her iPad 2 charged, be able to focus and have no distractions from toys or a tv or anything. All my props are pretty much kept in the closet in bins and basics for the photography business. My desk is in one corner, and hers will be on the opposite wall. It'll fit in nice because the office is the room that was suppose to be the nursery so its a calm, gorgeous pale purple colour with some purple flowers on one wall.

I bet you guys are dying to see what the before and after pictures look like! Well although the after picture is not the completely finished product, here is the middle point (i forgot to take a before picture...and its a good thing, because her room as you will see is a DISASTER!!) and the so far after! At the end of the week we hope to have her iPad in her school area, as well as everything else set up neatly and better organized. All in all this took about 15 minutes of our time....that included the time to clear off the desk before taking it out of her room and into my office and safely packaging up the collectors items that we have of hers.

 This is what her room looked like after we moved the desk....sadly we CLEANED a fair bit in there before moving the desk and it was STILL a disaster zone!
 The midpoint! The desk is in the office!!! Yay!
YAY!!!! It's not fully done yet but its getting there! This is her GORGEOUS desk, a dream desk for any little princess in my opinion! With her organization bins (that I will be labeling this week), still missing are labels, books, binder, iPad 2 & I need to find a wooden chair I can refinish to match the desk! But this is the starting point and I hope to have it completely done or close to it minus the matching chair by back to school time in a week! 

The whole process was quick and easy! Even the cleaning part! We got it done in a matter of 15 minutes! I even did some rearranging after taking that LAST picture! 

When I have it completely finished I will post a new picture of the totally finished product!

Saturday, August 25, 2012

The week before school & autism in our house

This time next week, we will be into the Labour Day long weekend. My family is so looking forward to it because its a 4 day weekend for hubby AND 2 of those days are PAID! The bonus? A is looking forward to it because once its done, she gets to GO BACK TO SCHOOL!!!

With the last week before school, that means a busy time in our house! We need to set up our homework area, finish any last minute back to school prep, redo our schedules and post them, get the house organized for those hectic school mornings, redo the entry way for school organization, plus more!

Last night, thanks to my AMAZING big sis, I was able to order my daughters school and allergy labels. Which means, OFFICIALLY, once that & her iPad 2 arrive in the mail (both hopefully next week!), we are OFFICIALLY 100% READY for back to school!

Now with the week before school and autism, for us, means MORE prep then we've been doing. This weekend we set up her homework area which is going in my office/photography studio (the room is quickly shrinking!!)

Then we set up our new schedules. We write them up, we make our velcro pictures, we cut, paste, laminate and put it all together! We review it as a family! We have our school schedules (what to expect during the day at school!), our morning schedules, after school schedules & bedtime schedules. We have our homework and tutoring schedules as well.

Next is our notes area! This is where we hang our new dry erase boards that we replace once a year otherwise they get too dirty. We each have one with our name on it. Then we have our individual calendars for remembering tutoring, work schedules, bookings, therapy appts, doctors appts, special school events, etc. Then we have the family calendar that has all that and then all our family events on it!

Then comes the menu making for her lunches. We discuss the foods and snacks she wants for her lunches and morning snacks. I make my menus and my grocery list AFTER taking pantry and freezer stock (since we are in our no spending month, I have a list of FULL stock for pantry and freezer already). We have a special cubby of drawers filled with back to school snacks for her, so she can pick them for her lunch each day. Divided into portion sizes by container or baggy to put into containers when packing the lunch. This includes organic juice boxes for the rare times I run out of organic homemade juice---I try to keep on top of that but sometimes I dont have the time! Thats the life of a mom, double business owner, wife & housekeeper, plus all the other things I do in my day to day life---this includes trail mix (homemade and nut free), snack mix (homemade and completely allergen free), etc. I will be honest, MOST of our snacks like homemade granola bars, muffins, treats, etc are frozen because they are homemade and completely allergen free. Its safer to keep them frozen otherwise they will go bad pretty fast. I do feed my child anything with perservatives in it, therefore, its hard to keep them out and not frozen for more then a day or two TOPS!

Next comes the labeling!! This is a big job because my daughters school requires that EVERYTHING be labeled with child name. This includes: clothes, shoes, supplies, books, bags, EVERYTHING!!!!! And in the case of my daughter with her SEVERE allergies, I need to have all her food and drink containers not only labeled with her name BUT with her allergy labels too!!! Same with her lunch bags! I literally will spend a couple hours labeling all her clothes, supplies, containers, etc! It's a time consuming event! I usually dedicate one afternoon to it, to get everything together, making sure all the new clothes fit and then are washed. Then I start the labeling process in between loads of laundry I label the things that don't need to be washed, etc.

That's the basics of my week prep. A lot more goes into it, but thats the basic idea of what goes on for me! I need to have my daughter fully involved in this week. She needs to know whats going on at ALL times! This is also the week, where we do our back to school run. That is where we get up at our usual time and go to bed at our usual time (year round). We get up and run our morning routine, we make the walk to school, we play at the playground at the end of the school day, we pack our morning snack and lunches for the day, then eating on the school schedule, reminding her to stay sitting. We play outside on weather appropriate days and on non weather appropriate days we play games inside and do crafts, just like they would at school during "recess" times. We don't watch tv during the day, only after school IF then! She gets into the swing of things and learns what to expect each day.

This is the basics of our final week before school! This should be an interesting journey. It's also my week for back to school meetings with teachers, the principal, OT's, school workers, etc. To boot? My daughter has a dental surgery appt on Thursday of this week & its about 45 minutes away and she doesnt travel well due to her autism AND due to the accident she was in earlier this summer. I'm really worried about that appointment! Wish me luck on this busy week! Here's to hoping I can get it ALL accomplished in one week!

Friday, August 17, 2012

Back To School She Goes


HI HO HI HO ITS OFF TO SCHOOL SHE SOON GOES!!!

Princess A heads back to school VERY soon! As in 18 days soon! Less then 3 weeks!!!

With the autism, anxiety is a big thing when it comes to ANY change! Even though she's been to the school before, we have played at the playground this summer & you can SEE the school from our backyard, she's still very anxious!

A friend of mine recommended specialneeds.com, I had never seen the site before but fell in love with it! This friend is an AMAZING support and I truly appreciate her help. She knows financially, that I can't afford to spend money. So this websites as great! The specific suggestions were some things that I already do but some were things I had NEVER thought of!

Basically without going into details the website suggestions are:


Because we live RIGHT by the school, we spend a lot of time playing at the playground and I walk her around, pointing out what windows were from what classes she had last year, what doors she entered and all that! 

We started preparing in June before the end of last year, for the new school year. We kept a steady schedule all summer. We kept the same wake up and bedtime from the school year as well. I do NOT break that for anything really. This summer the ONLY time bedtime was broke was soccer night. Other then that, NOTHING not even her camping vacation, breaks her bedtime and wake up schedules.  We took FULL stock of all the school supplies and clothes, shoes, backpack and lunch bags, among all the other things you need for school from last year. Last year she didn't have much school supplies, as it was just Junior Kindergarten. We made a detailed list of the things she needed and the things she would like to have---for example things like a princess or pink pencil case, a princess or my little pony lunch bag, new lunch containers that snapped shut because those are easier for her, At least 1 "pretty" lunch container and drink container the rest could be plain or whatever we could get cheap but good quality---just simple things like that. 

This weekend we go through the clothes again, to see what won't be fitting this school year and make the rest of our clothes shopping list (she's got a good chunk of her clothes but NOT all of it yet!) When her minuscule amount of government money comes in on Monday we hope to finish the back to school shopping! My daughter is super excited because we are breaking our no spend 2 months to have a special mommy/daughter day. (Two very bad things have happened lately....our house was broken into with her and I home Tuesday & then today, just in the field outside our backyard a girl was raped in broad daylight and my daughter sadly was in the backyard with me when it happened). She's having a rough time with the bad things going on, with feeling safe in her own home, with getting ready for back to school, so we are doing lunch out (& I am trying to NOT feel guilty about it) and finish her back to school shopping! 

Talk about it! That's not something we really do. Yes we talk about school needs, supplies, that she's going into Senior Kindergarten and all that, but we don't talk about her feelings, her worries, her fears, her NEEDS! So, tomorrow is a day off for my hubby & we are going to have a little chat at the school during a picnic and playground play! Make it a fun time at the school!

Plan on playdates and get togethers! I don't tend to make many playdates with her classmates simply because shes got ONE really close friend whos parents are never really around so making a playdate is impossible. Sometimes we run into her at the pool or playing outside but other then that, thats about all!  When we do have those encounters, we let her play as long as is possible. 

Pack a friend! It can be a stuffed animal, a picture or a note according to the website! At my daughters school you are NOT allowed to bring in toys and stuffed animals, etc, from home. So, I plan to send her a picture and a note on her first day and maybe each day send a little note for her lunch to show her we're thinking of her and miss her and hope shes having a good day and loving school!

There is a lot more planning when it comes to school for a special needs child (not only autistic children). In my daughters specific cause I need to have EVERYTHING planned to a T and VERY visual! Last year we had a lot of ups and downs with that, this year I have some awesome new ideas that I think will work a lot better! Our morning schedule will be the same, get up, dressed, hair done, breakfast, teeth brushed, lunch and snack packed, homework reviewed, agenda double checked, school calendar double checked (to make sure we aren't missing any special days---ie: pajama day, dress up day, etc), backpack packed, shoes on, coat/sweater/snow suit or whatever on & leave the door! All this takes about 1.5 hours to do....then we allow ourselves 15 minutes to get to school. It takes 2-3 minutes to walk there, that leaves 12-13 minutes to play before the school day starts! Starting the day with some fun physical activity with her friend! Just like after school, if the weather co-operates and we don't have prior commitments I permit her to play around outside. It burns off some energy, good physical activity and good for her! Plus nice fresh air. Most days though, she's hit that imaginary brick wall and by the end of the school day shes just DONE and had it it, wanting to go home, relax, have a snack & maybe watch a tv show, or read a book, or just some relaxing quite time in her comfy chair! Then we prepare dinner, eat, do homework, playtime (outside if we can), family time, bath time and bed prep time (teeth and hair brushed, wash and hands washed, pj's on, a/c on, curled up in bed, 2 books read, then tucking in!). 

All year round, she has the SAME morning and evening schedule. We change things up a little in the summer---more activities, this summer we did swim lessons and soccer. But we try our hardest to keep that same schedule! With 18 days to go, we are getting hard core into the school prep and preparing even more then we have been all summer! I plan to use some of the tips I hadn't thought of from that website to get the anxiety levels done asap!!! 

Are your special needs children ready to head back to school or do you have some prep work to do? Leave us a comment and let us know!!!

Monday, August 13, 2012

Tackling fears

My daughter has ALWAYS had a major fear of water. Bath time was even a struggle. She wouldn't be in water without being held onto TIGHTLY and you weren't allowed to adjust your hold or move at all!

This summer we decided because we live in a place that provides a pool to all the house residents, that we could tackle this fear of water with a specialist. We enlisted a Red Cross lifeguard who had experience with special needs kids, especially autistic children.

We do three sets of sessions over the summer, each session has 10 lessons.

Session 1: She was in with a little boy who LOVED the water, loved the deep end and loved messing around, being the center of attention! She barely got in the water that whole session. It felt like a waste. But then on the times we would bring her to the pool with us, not for lessons, if her instructor was there, her instructor would take her break and get in the pool with A. A flourished with that one on one attention and slowly began to trust her instructor and very slowly started to feel safe in the water!

Session 2, was a complete 180 from session 1. E, the instructor & the other girl that held lessons at the same time as her, had spoken with the woman in charge of booking the lessons, and they had decided that given A's situation, it would be best to do 1 on 1 lessons. The woman in charge had seen E in the pool working with A on one of her breaks one day and agreed that based on what she had seen in lessons vs what she saw 1 on 1, that A needed 1 on 1 lessons, so they set it up. Session 2 went amazingly well! She went from not even getting into the pool to jumping in, dunking, swimming assisted, swimming unassisted with a floatation device and swimming unassisted without a floatation device for small distance. She was jumping in the deep end. Would walk the diving board but not jump it. She even progressed to no floatation device MOST of the time.

Today we started session 3 & we progressed so far that she jumped 6 times off the diving board with her teacher helping!!! The first jump wasn't happening, and considering this was the beginning of week 7 and she kept wanting to but then getting scared, we did something many parents would frown upon! If you do, you may want to stop reading. I don't want to hear the criticism I know MANY parents and non parents alike would frown upon! We let the teacher take hold of her and safely jump off the diving board. Yes she was scared but by the time she came up from the water she had a HUGE smile on her face & was SOOOOOOO proud that she had did it.....so proud that she did it 5 more times after that, still assisted but 5 times by HER OWN CHOICE!

She's no longer afraid of the pool! She's made major progress and has progress OUT of preschool swimming in just 6 weeks....well really 5 because she missed the first week of swim lessons!

There were many times when she wanted to give up during the first session! Many times where she said "I can't do this" during the second session, but with the encouragement, she persevered and session 3 is here and shes doing AMAZING!!!

video
She's tackled her fear of water and although she still won't play any of the splashing games, she's doing amazing and we are so proud of our Autistic Princess!!!

Sunday, August 5, 2012

"I don't feel the pain"

I get asked a lot, why my daughter spends so much time at doctors or ER's. With her multitude of allergies, that are anaphylatic, more times then not, that is why, BUT there are a LOT of times when it's actually from her Autism. Not all autistic children do this, but many do. My daughter self harms.

Many people think of self harming as something depressed adults and teens do. They think its a way to get attention. That can be the case some of the time.

With Autism, however, its a way to get comfort, more times then not its for DEEP PRESSURE! My daughter NEEDS her deep pressure! She truly can NOT live without it. A weighted blanket is on my MUST buy list, as is a weighted vest for school. And a weighted lap pad for school so that its easier for her to sit and do her work. My biggest issue is that we don't make enough money to support ourselves, let alone take care of the expenses of the things that she NEEDS!

My daughter started self harming herself at about 3 months old, whens he would bang her head into things. I told her pediatrician, who brushed it off as a "normal" behaviour for a 3 month old. Seriously?! 6 months later, it was so bad that she would bang her head into the walls in her room (which under that thin drywall layer they were PURE cement), to the point of severe bumps, bruise and marks that scared the crud out of us and everyone who saw them. Doctor still brushed us off. I was worried, severely, about brain damage or internal bleeding! Literally she would bang her head for HOURS on end. Nothing I did would stop it. You could move her, she'd just go to the closest wall. You could put blankets and pillows everywhere, she would dig under them to get to the wall. She was already out a crib and had been for nearly 5 months by that point because she was a HUGE climber. Not matter what we tried, she was able to outsmart us. \

You would wake in the middle of the night, to the rhythmic BANG, BANG, BANG of her head, over and over and over again. For hours it would go on, day and night. Finally, I couldn't take it anymore, I took her to the emergency room when she gave me a scare and passed out from it. Apparently she had caused herself so much pain, she had fainted. But she NEVER shed a tear. Never showed any sign of pain.

Finally, the pediatrician sent her for a CT scan at 9 months, but if you have ever had a CT scan done, you know how loud those machines are to a adult with no trouble with sound, to my daughter who couldn't have a parent in the room, it was TORTURE! They spent over 1.5 hours TRYING to get a good scan and to no avail. They gave up, and I felt like the WORST MOM EVER for letting them torture her!

My daughter is now 5. She still self-harm's, I still don't get taken seriously about it. But I do the best I can to stay with her, to try and stop it when its happening (a lot of time it happens to her during her night terrors) & to keep her safe. I worry that there will be long term damage but I've tried everything I could so far and to no avail! I am in the process of switching her to my family doctor in another city and county. In hopes of getting her some help from someone else. Even if that means that I need to drive an hour to & from  EACH appointment or longer, then so be it. If I can get her the help she needs, that's what matters!

When you know your child has severely hurt themself & you say "What hurts?" & they reply with "I don't feel the pain!", you KNOW somethings NOT right! I just wish other people, like professionals, would realize that!

Friday, August 3, 2012

Welcome to my world

Hi everyone!

First & foremost, I want to welcome you to my insane world! My world of being a wife, a mother to an autistic child, a stay at home mom, a work from home mom, an owner of 2 home based businesses & oh yeah, a woman!

Most people say that being a stay at home mom is easy work. That's your personal opinion & you are entitled to that. Having worked both from home, and outside the house, owning my own businesses, working for big corporations & small self own restaurants & even worked YEARS as part owner of a construction business where we did everything from painting, drywall, tiling, wallpaper, concrete, gardening, wood working, building buildings and cabnetry, installing windows, doors and everything in between, to name a few types of businesses, I know the ins and outs of businesses. I know how hard those jobs can be! I managed a restaurant for over 2 years, where the owner knew NOTHING about ANYTHING related to the business. No joke! He couldn't do the paper work, banking, budgeting, ordering, shopping, anything! But he could cook like you could only imagine! Amazing food! We were mainly a truck stop/factory stop but he had a few uncommon items on his menu & then their was the Sir Lankan food that he would prepare for us! AMAZING!

I have to say though, with ALL the jobs I have had and all the different areas I have worked, I have to say, being a stay at home mom has been BY FAR the HARDEST JOB EVER!

I'm mom to 1 beautiful, sweet little Princess who we call Princess A. She's 5 years old, energetic, fun loving, dedicated, determined, caring, support (among many other wonderful traits), AUTISTIC little girl! On June 11th of this year, I was 28 weeks pregnant, exactly, with my identical twin girls Addisyn & Analeigh. They sadly, were both born sleeping. I have a wonderful & loving husband J! We have 2 cats! That's my immediate family living under my roof!

Princess A is your typical 5 year old, just finished JK, loves doing fun things, is super talented in dance, arts, music & other areas of her life. She's been doing gymnastics since 4 months old & is good enough to go professional and compete with kids twice her age! She LOVES ballet! She's also a big soccer fan & swim fan (those two are as recent as this summer! Soccer from June to August 2nd and swim has been going on all summer but just in the last two weeks has she started to enjoy it....it takes private lessons but it really has helped her).

I'm the type of mom, where my kid comes before ALL else! Literally, nothing comes before her, if I can honestly help it! My daughter is my world! She's more then a full time job, some days I am at my wits end before its even "wake up" time and some days I want to rip my hair out. Some days I want to give up, some days I see that smile and no matter HOW bad a day its been, she makes it ALL worth it!

My daughter has had her diagnoses made, taken away, made again and taken away AGAIN! Currently it's "taken away" & I am awaiting an appointment time with a new OT and therapist. Many people say that because the diagnoses has been taken away, that means she NOT Autistic. That's like saying because someone doesn't always carry their epipen, they don't have allergies! Sorry, in both cases I think its crap! My daughter is autistic and she's got a mile and a half long list of allergies! But back to the autism!

For 5 years, I have been fighting with doctors, OT's, therapists, specialist and more people, to get her the help she needs! Each time I think I am making progress, bam, I get rejected again! My daughter shows ALL the signs of autism, as well as SEVERE sensory issues (and I mean so severe that she can't do normal things like wear clothes unless 100% necessary), can't shower, can't use anything but a special homemade soap that is made in Florida and shipped up to us. She can't play like an average child, she doesn't learn like an average child, she can't write properly (doesn't help that she's also dyslexic). She has a great deal of trouble communicating! She had AMAZING speech till 20 months old, when LITERALLY over night, she STOPPED talking! At about 4.5 years old, speech slowly started to come back, at 5 years 2 months she's still not nearly up to par but with all the hard work I put in, she's making progress.

All her "therapy" is done by me! ALL OF IT! All the expenses are out of my pocket, meaning we incur debt, we can't afford the basics in life, we can't LIVE a REGULAR life, like an average person! I have to make EVERY SINGLE SOLITARY FOOD FROM SCRATCH! All the cooking and baking! NOTHING can be prepacked! It's a VERY time consuming process for me!

Between the costs financially & the costs time wise, my life is totally, completely, 100% in total chaos 24/7! And I do mean 24/7!!! I'm LUCKY if we get 2-3 hours of sleep TOTAL in a 24 hour period! No she doesn't nap but she doesn't really sleep either! Which means, because J works shift work, its all on mama to deal with it! I am stressed beyond belief and I am stretched to the core. My last nerve snapped years ago!

This is the story of our lives, our journeys and our sanity (or maybe our lack of sanity). Join us! But hold on tight, you're in for a bumpy ride!