DIAGNOSIS

The day has come! We officially have a diagnosis of Autism for Ginja. I couldn't be more relieved knowing the doors this opens for her and the support for our family. I am thankful I followed my gut and pushed back against the drs saying she was an average toddler with behaviour issues. Now onto opening doors.

Updates

Today out oldest is going on his third school field trip and is beyond excited to be going to a water park. I think I have heard something about this trip about ten times a day for the last ten days. 

The last few months since I last wrote have been busy. I started a new job in the esthetic field and am thoroughly enjoying myself. I work part time around hubby's hours so we are not putting the kids in child care. Hubby has not gotten any better from his head and neck injury that occurred in January of this year and we just got to meet with a specialist last week. Hubby has what they call an acute brain injury with some post concussive syndrome symptoms. So the next few steps will be an epply procedure to attempt to rebalance his equilibrium through his ears. The Dr doesn't think this will help but everything must be ruled out. Next step will be to stop all medication! I am not looking forward to this portion as I know how much pain hubby is in. I will have to take the two weeks surrounding this appt off. If that doesn't help which dr doesn't think it will is to start injections into the neck in the injured areas. The good news is there is no internal bleed and there are no breaks.

Our dearest Ginja. I'm not sure if there is a full moon on our everyday but she has definitely kept us on our toes. The meltdowns have been more intense and more frequent with a lot of stimming. She went through a throwing stage in her room so now all hard toys have been removed, she has her double bed and stuffed animals. We finished speech this past week with our best appointment yet. There was excitement to see her speech and language pathologist, good waiting room play with stacking blocks and an easy transition into the room. She followed the schedule, with minimal distractions but those are expected. I felt our Friday the 13th was going well, then the day took a drastic turn. I left ten minutes earlier to grab lil man and a friends little girl that we carpool with and hubby was home early so I left the girls with him. I headed to the bank and still arrived at the school well before pickup time. I was talking to another mom when I got a phone call that every parent dreads. Ginja had escaped, which has happened before and the farthest she ever went in the past was the backyard. We had installed alarms and a device called the guardian that keeps the door shut and is a three step process to open. While dad was putting her sister for a nap she opened it all, and escaped! The police were called and the search began, I pulled my son and the little girl we carpool from class and sped like a madwoman home, I called one of my hubby's friends that Ginja adores to come help us, he said he would be right on the way. About 5 minutes later he called me back to tell me he had found Ginja, turns out she had walked over 3 kms in ten minutes through a thunder storm and ended up in the general area of his house. I was so relieved that she was found, and by someone she adores. Our friend and his wife brought her in changed her wet clothes gave her a juice box while I raced over there. We filled out the police report and then I took her home to her Daddy. It was the scariest moment as a parent and we know she is a flight risk and have put proper procedures into place to prevent her from getting out. So next step is more safety precautions, more locks and an emergency protocol. I am in the process of creating a protocol sheet with two pictures of her, all her pertinent information like height, weight etc and identifying marks along with information for when she is found. She is delayed in speech but more verbal than some cases of autism that we know. I am really looking forward to tomorrow's appointment with her specialist in Ottawa. 

Soccer Mom

I am a soccer mom, but deep down I think at heart I am a football mom!! Lil Man is signed up for soccer and I'm currently sitting at the pre season assessment. We found out this week that our small town (which has never had youth football) has a league now. Dad and I agree playing both is too much as I have gone back to work part time. I will see every practice but will miss every game due to my schedule. Dad has already offered to video tape games for me. Ginja has started seeing her speech and language pathologist, boy was that first appointment a nightmare. She refused to sit down and do her work, was very distracted and had a meltdown during her session. I feel bad that I was relieved that other people witness her behaviour. It also didn't help she was up most of the night and I had to wake her for her appointment. Coco is running around and we have been noticing her covering her ears and we are thinking it's mimic behaviour but time will tell. 

So the season starts :) that means beautiful weather is upon us!

Mother Nature

At the beginning of the week we were outside with the kids in t-shirts and shorts cleaning up the garden and post snow melt. Last night it cooked right down and I was out in capris and flats. I had gone out to visit friends and to give my friend a accupressure point massage to attempt to induce labour. She is 40+4 and nothing! So I got home and remembered to turn the heat back on, thankfully because we woke up to Snow! Not the fall on the ground and melt right away snow either. I think Mother Nature is going through menopause!! 

The first picture is yesterday on my way out, I stopped at Tim Horton's and then the second picture is from my bedroom window this morning around 9 am. It snowed all day since I took this picture. I am so ready for Spring. 

Over the weekend we went to friends that live in the country, the kids ran around and played for hours. They came home and slept so good. We have put a double futon mattress in Ginja's room and what a huge difference. She is allowed to have her iPad until she falls asleep so she isn't crawling in with us all night. We have decided we need to pick our battles, I lay awake until I hear that last show fade and  her room go quite. Last night she was up until 3:30 am, but was in her room. 

We have been put in the wait list for services through Ottawa Children's Treatment Centre and also received a referral to a pediatrician in Ottawa to attempt to obtain a provisional diagnosis. I have to pick up our referral letter for a private diagnosis referral from the family dr this week. We have received some push back from them about insurance coverage. For a private diagnosis we are looking at about $2500 out of pocket. Insurance will cover 80% up to a maximum of $1000. Now a portion of the time is strictly with the parents and is billed at about $225 per hour, they want to see us on the first visit for minimum 90 minutes. Our family dr believes it is fraudulent to have my insurance cover that portion and to also have Ginja's portion cover her time with the psychologist. I don't quite understand that personally so I am hoping the paperwork is handled by the paediatricians office. We have been working with our infant and child development worker and also have a home based speech and language program in effect. Ginja has started stringing longer sentences together and has started using 5 word sentences. Ginja will start attending weekly speech and language session with her pathologist in May until about mid to end of June. 

Lil Man received an award at school last week for perseverance and determination. It is good to see he is pushing along as we had some issues with him giving up before. I have to implement our home reading program because the teacher rarely sends homework home, even after being asked for more. I have been looking at homeschooling websites and I want to start challenging him at home. He is very intelligent, just gets bored easily and frustrated when answers don't just come to him. I am extremely pleased with his reading, when he is done his chores he will play with his sisters or read. When we are travelling to visit family he will read in the van. You wouldn't know starting grade 2 that he couldn't read, and now he is reading well past his level. I give all the credit to his second grade teacher Mrs Robillard. She is by far the favorite teacher he has had. She put so much effort into her students, something that is rarely seen now a days. 

Our Coco! She is so full of energy always so happy, and progressing so well. It wasn't until I had her and have been watching her grow and develop, that I realized raising a baby could be so easy! She and Ginja both starting walking around their first birthdays, but I notice Coco talks so much more, is so independant and loving. She adores her big sister and brother. If I could have been guaranteed a pregnancy with no vomiting and a baby exactly like her, I would have a football team! My kids are my entire world and they are each individual and unique. I couldn't imagine our lives without them. 

Busy Month

March was packed full for this family. Dad  has a work related injury to his neck. Lots of TLC for him, and a long road to recovery. A lot of stuff still happening and a diagnosis of post-concussive syndrome. Attended a few autism related functions over the month. Illness dragged on in the children Coco is on antibiotics now after being sick for almost 7 weeks straight. Daddy bought Ginja an iPad mini and wow what a different child! We have implemented the home speech and language program as well as programming on the iPad and we got a 5 word sentence yesterday super excited! Lil man had some dental work done and was super brave not wanting nitrous gas and only the needle to freeze, much braver than I! To think of it they have never offered me nitrous gas, I could use a good laugh :) We just got the call for an appointment with paediatrician in Ottawa for June, just have to confirm details. In the process for referral to Emerging Minds and during this our family dr just up and decided to close her clinic! So now on the hunt for an autism experienced Dr in the area, as the offered replacement just isn't at the standard for autism care that we need. 

    I have been busy making flowers for the wedding bouquets. I am just getting into the groove and it's all coming along nicely. I started by cutting the fabric I to strips.

As you can see I need a little more pink but lots of creams and whites. From there, I looked through a million and one Pinterest links to find the flower style that I liked and follow some tutorials, then started to branch out with my own ideas. Cut a ton of circles out of the fabric, because most of the flowers you can make from fabric utilize a circle shape. 

A lot of work to make them perfect a few I said no way and tossed them immediately!

I have come to the conclusion I like shabby chic style flowers and roses. I can't wait to finish this project and to share it. 

Hearing passed

Our speech and language pathologist for Ginja suggested we have her hearing tested to ensure no concerns, as she has over sensitive ears and is really soft toned with her speech. So I made sure we all got a full eight hours of sleep. Dad wasn't able to get time off for the appointment so I was ready for the worst appointment ever (when family dr looks at her ears we have to pin her, she goes into meltdown) so I was ready for a nightmare appointment to occur. We went to Heritage Hearing Clinic in Pembroke, they set aside an appointment for two audiologists to work with her. Much to my surprise they were amazing with Ginja, she didn't fuss, fight or cry once!!! I sat back and watched them in action, they didn't give her a minute to doubt and allowed her to play while conducting the tests. So she is definitely hearing us:) The audiologist performed words with Ginja while she was in the sound proof booth, the other audiologist was with her and she pointed to the pictures each and every time and the audiologist said she could not turn the volume any lower and she was still hearing extremely well. That explains her over sensitivity. So step one done, rule out hearing issues. This week we also did the one hour intake with Ottawa Children's Treatment Centre and have been referred to the next step which is the Getting Started program where they will give us strategies for day to day life and start therapies. That call will take about 6 weeks to receive and then we will be seen in about 4-5 months. That is discouraging to me as a mom, as early intervention shows the best results. They are the ones who decide if a psychological assessment would be beneficial. So I have been looking into our options, I even called McMaster Children's Hospital where my oldest was born and they are at an approximate wait of 12 months, better but still not good enough. Fiancées family is seeing if their family doctor who is also a paediatrician can see her and our last resort is to take her to Energing Minds in Ottawa for a private diagnosis, which is not covered by OHIP and we can only claim $1000 per year, so there would still be out of pocket fees for us, but is the quickest route to services and a diagnosis. 

Above is our beautiful Ginja waiting to enter her hearing test. So time to flip the page and keep on trucking :D

Ignited

Yesterday I attended the local autism group with Ginja. Before entering that room I knew she had autistic tendencies, when the doors opened it was like we were pulled right into the group and had been attending all along. No judgements were passed for her frequent meltdown and screaming events. In each one of the beautiful children I saw characteristics of my Ginja. I felt relieved and understood. Each one of the other parents knew exactly where I was because they at one time were in my place. They had all waited for a diagnosis, they all know my every day life. They knew how to make me laugh while I sat in My chair observing and watching the door to make sure my and their flight risk children didn't escape. I sat there taking it all in, and it's coincidental that group occurred on Sunday  because it was like "church" for me. For a while deep down I knew Ginja showed autistic tendancies, the drs pushed back and told me to wait it out she would come around etc. As I sat there I was happy to be a part of an unspoken understanding, and within myself I found peace knowing I was right for trusting my gut instinct. In that moment I became angry at the health care system for thinking it was ok to make children wait 18-24 months for a diagnosis. In that moment I decided I would not wait patiently and I became a determined momma bear. I came home and researched my butt off, staying up until 3 am with our sleepless Ginja. This morning I started calling. Now I wait for a few returned calls, and know I have an option for private diagnosis that could be majority covered by insurance within the next couple of months! I will not stop fighting for my kids and yesterday ignited a new flame.