Archive for the ‘Family’ Category

Just a glimpse….

Monday, October 1st, 2018

 

A glimpse of what a life is like with an autistic child…… I’m just venting here, not really thinking anyone will read this, but I just felt I had to put my personal thoughts on paper, it feels better to write things down sometimes. I am only describing how I feel, and what I think others may feel too. Some of it is down right raw, please look past the judgement and maybe try to understand, if everyone was more understanding rather than judgemental we would be living in a much nicer world.

Not sure if its the cold wind in the air and because its a gloomy day but its just one of those days that makes you want to weep. Everything and everyone gets you down and you can’t stop the negative thoughts that come to mind and you just sit and wallow in your sorrow. I have so much to be grateful for and yet I can’t help but think well it could be better. I try to tell myself that it could be worse, way worse, but its hard to overcome the negativity with the positive. It’s a daily struggle to keep positive and to not worry about the future. I worry about the boys, but those seem like normal worries but when I worry about Elizabeth, it takes on a life of its own. She’s doing well, speaking somewhat now, not really conversing but we communicate.  We celebrate the little things, one word, a smile, a song she might sing, a sentence she might say, sharing a toy or a snack, making a spontaneous comment out of the blue. It seemed like I waited forever until she  finally learned to say “mommy” or “I love you mommy” and now I feel so thankful and excited each and every time she says it,  but for every little joy and accomplishment, like having her say cheese when I take a pic and actually smiling, there are many more worries that are overwhelming and loom over us like a bad cloud ready to pour down rain and the fear of it never ending. Its just hard, everyday is hard, always dealing with one type of problem or another. Getting and keeping the clothes on, brushing hair or teeth, sensory problems, does certain clothing itch or not feel comfortable and how do you know if they aren’t verbal. Do lights and sounds bother them, as usually it does in varying degrees. There is so much to learn about a child with autism as they have many issues they have to deal with on a daily basis. My worse fears are when we go out, and boy am I scared of taking her out, for so many reasons. I’m scared she will run off and I won’t be able to catch her, I’m scared she’ll get into someone’s face that won’t understand, I’m scared the kids will reject her, or not understand why she doesn’t always respond when being spoken too. I worry that they will classify her as weird or not normal if they see her sing to herself, or make loud noises, or cover her ears. I’m scared to take her to friends’ houses as I don’t know if they will understand and its not a fun time for me, as I’m constantly looking at her, making sure she doesn’t break something in their house, or try to climb somewhere she’s not suppose too, or if she’s not playing or sharing with her playdate, or if she’ll find a way to get out of the house, or heck maybe forget where the bathroom is and pee and poop on the floor. Only to be scared that we will never be invited back. I’m scared people will think we aren’t good parents for they may disagree with the way we do things with her. We have lost friends since her diagnosis and I don’t know if its because of her and her autism, or is it us, but it hurts either way. I’m scared of her future and what will happen if her dad and I aren’t around, will her brother’s take care of her? I’m hoping she will be independent but we won’t know that for years to come still. She has no friends and I think she could be a great friend, but she will need a friend that will be really understanding and patient and will put up with alot unknowns and different behaviour, or rather not familiar behaviour. I fear highschool, even grade school, she’s only in grade one but eventually a mean kid will say something to her and it breaks my heart to think of what she is going to go through. I can’t always be there, and if and when someone hurts her, it will kill me that I can’t fix it for her, that I can’t hurt the person that hurt her, even though I believe in what goes around comes around, but when it comes to my child, all bets are off, and if I find out someone is hurting her, God help them.  She will have so many obstacles to climb and crawl through and jump over. I want to protect her, but its hard, I got to let her be a child and to do things, but its different, I wasn’t so afraid of letting go with the boys as I am with her, I just fear what she might do or get into. I have to watch her as I fear for her life, parents of autistic children have to think of the unthinkable as we have to cover all our basis, so when we think what if she gets lost, will she be able to communicate with someone or will she even be found, and that’s when we get id bracelets and tracking devices, all of which we have tried but she broke the gps watch, and won’t wear her id bracelet, so I feel like I can’t ever take my eyes off her. I go to the playground, or just see kids all around and I envy the simple life they get to lead and how my child won’t have a life like that. My heart breaks everyday for her, every time I take her to get on teh school bus and she needs a harness while the other kids get on without one, or how I have to explain to the driver that she may take off some of her clothes or to not give her her back pack because she will get in it and eat everything in her lunch box all at once and make a mess in teh process. I have to explain to everyone that we meet that she is different and to expect the unexpected and I can only hope they don’t hold it against her or me for that matter. Sometimes I feel like I’m not taking her out enough or doing enough things with her, but the thought scares me so much and all the possibilities of what may happen often cause me so much anxiety that I don’t go. I feel like I’m keeping her in a jail at times. I get tired explaining a thousand times to her about different things, when another child would have understand after the 100th time they were told. Don’t touch teh stove takes on a whole new meaning with an autistic child because all it takes is one time for them to touch it and then you are dealing with a hurt autistic child that won’t let you care to their wound and are freaking out and crying in pain, and then what do you do? I dread thinking that if my little girl ever breaks her leg or needs stitches, I have no clue how she will deal with nurses and hospitals and needles and the pain. I have seen how she acts to mosquitoes bites and bruises, she is more apt to play with them and scratch at them and make them worse and not leave them alone, so hurting herself is a constant fear I have for her.  I want to sit and watch a movie with her, but she won’t sit for more than 5-10 mins and she’s up and running around and most likely wants to do something else, as nothing can contain her attention for long periods of time. She won’t let me brush her hair, and its so hard, and I wanted a girl for so long and now I have one and everyone tells me to cut her hair, but I don’t want too, I wanted a girl with long hair so I could do the things to her hair that my mom did to me, but she won’t let me touch it and if more than one day goes by where I haven’t brushed it the knots in the back of her neck get so bad and it makes it harder and hurts her more to brush, its a vicious cycle.  She is so sweet and so loving but so much work, and I fall to bed exhausted every night. I just want a break, a lunch date with a friend, go out to see a movie, a date with dad or with one of the kiddos or my mom. No one other than another mom of a disabled child understands what we go through in a day. We run a marathon each and every day essentially, and especially if we have more than one child. EAch autistic child has their own problems, many have similar issues and many have other issues, its true when they say you have met one person with autism then you have met ONE person with autism, not two are alike. What my daughter deals with is different than what my neighbour with their son deal with but we do have similarities of course. Not only do we have to feed them and clean and bath and dress them but some smear their poop, some hit their heads on the wall or some sway back and forth, some speak, some don’t, they all have different issues with lights and sounds and forget about sensory, I have heard it say that a turtle neck can feel like the child is being strangled, or a sweater can be so itchy or a 3/4 sleeve can drive an autistic person bonkers, so you have to figure out all these things. Many have digestive problems, and eating habits are poor, Elizabeth won’t eat meat or veggies or fruits, maybe apples and bananas sometimes, and she used to eat watermelon but not anymore. We did the gluten free and dairy free diet, didn’t work. You try almost anything to help your child. You take them to many different doctors about so many issues, and then to therapists to try to help me speak and learn and develop and then continue that at home, so you are a mom but have to become their teacher and their advocate and you learn to fight for them, to go to the higher ups to get things done for your child’s sake, to fight the educational system and demand an EA in the class simply because you fear they may run and they need more attention, so smaller ratios to children and teachers in class. You have to fight the government as they are not doing enough, children need to be assessed at an earlier age, and get more help, therapeutic help, the earlier the better. We need more centres for autism. More therapists to help our children, because if our children are helped at an early age, their progression is so much quicker and they learn so much more and have so much potential in the future. Our daughter almost missed out on pivotal therapy all because of her age. They had capped it so that you couldn’t get this early childhood therapy unless you were under the age of 5, do you know when we finally got the word that she was accepted into one of these programs? Right after her 4th birthday and I thank God she got in when she did, as she did 2 years of 1:1 ABA therapy and it helped her so much. If she was 5, she wouldn’t have been offered that placement, and why, because of her age, AUTISM doesn’t stop at age 5!!!!! Don’t get me started. I went and protested and wrote letters and petitions and joined groups and went to rally’s all for the sake of our children and getting them the therapy they needed. It’s crazy what us parents of autistic children have to go through to get help for our kids. Parents need money, aba is not cheap, its about $50,000 a year but of course we have our government we just have to get on a waiting list and wait our turn because their are not enough therapists, enough centres to take care of all these kids. If we have money for infrastructure or immigrants, then we should have money for OUR children, they will run the future, they will vote and they are the ones you need to worry about and help and protect and provide every measure of assistance possible, I’m talking to the politicians here because in the end these children will become adults and they will vote, and most likely not for the ones that didn’t help them when they were young. Between dr’s appt’s and therapists and writing political leaders and educational superintendents to just making sure they are in your constant eye sight, or not too far, as many know, you turn your back, and all heck can break loose. My daughter would destroy furniture, the walls, computers, ipads, tv’s, vcr’s, just about everything in one way or another. Throwing it down, pouring liquids over things, playing with the toilet water, or cracking eggs into dinner that was just made,or pouring flour all over the flour, the mess just never ends. You basically need to be a wife, mother, teacher, nurse, therapist, maid, friend, and everything in between when raising an autistic child. We essentially run on empty, on fumes by the end of the day and we have many down days, many days when we get overwhelmed and feel like we are going to lose it.  A lot of us even think of the worse at really low points and on days where we do everything and its not enough, and our child is hitting us, or hitting themselves, or crying uncontrollably or breaking and making messes all over, that their lives would be better without us (its just the frustration talking) because we know that WE, their moms are the only ones that truly know how to deal with them and if we weren’t here we fear what will happen to our precious children, so that usually snaps us out of black haze, the stupid thoughts that occasionally creep into your mind and you are so tired and overwhelmed and you think you just can’t take anymore….and Yes, daddy’s can feel the same way, daddy’s help, they are there and they try,  but there is no bond like a mother’s and when you spend 24/7 with a special needs child, you learn everything about them and every way to calm them down, to make them happy, to help them when they are upset or angry, and even then, it doesn’t always work so you improvise and pray to God that it works, it becomes a lot to deal with. I know a few mom’s with autistic sons who are violent and I know how hard it is with Elizabeth and she’s not violent, so I can only imagine dealing with what you have and adding violent outbursts to that. I just don’t know how some do it. Their autistic children who won’t sleep, they won’t sleep!!! I mean some sleep for an hour or two, how can a parent function while staying up watching your child and getting up for work the next day, or even staying home with the child, its crazy. Some hit themselves over and over and they need to wear helmets, some break walls with their heads, some hurt the parents that love them so, and not because they want too, its that they don’t know how to express what they are feeling. They have so many things going on at once, its hard to focus, and therefore must be so frustrating. When a child is on the floor in the mall, its not because they aren’t getting what they want, its because they can’t express what they are feeling at the moment and its all too much and may need some time to calm down. Some need hours to calm down, others need minutes and maybe a good strong hug for a while. I remember leaving the aquarium with Elizabeth last year, she loved it so much, didn’t want to leave, and she just got overwhelmed and started screaming and laying on the floor and my hubby had to physically carry her to the car. I felt like people were watching us, maybe even video taping us thinking what bad parents we were, but at that moment, we had tried everything we knew to make Elizabeth understand that it was time to leave. I didn’t give her a warning and that may have been enough to set her off, as they usually like routines and need to know when something will finish ahead of time so they can prepare. Now I tell her all the time, Elizabeth you have 5 minutes until bedtime, or 5 minutes until we have to go, she may protest, but she knows its coming so she is prepared. I guess I’m writing this because I’m tired. So tired, and I just feel for the moms that deal with this daily and no one knows what we go through on a daily basis. So here is just a little bit of what goes on in our lives, and trust me that there is so much more I could say and I’m just scratching the surface, and I can’t stress it enough, if you know any moms with a disabled child, please reach out to them, they most likely won’t reach out to you, we will think you probably want nothing to do with us anymore, and may think you are mad at us even, we won’t want to bother you, so please pick up the phone and call them, talk to them, take them out for lunch, or to go shopping, to see a movie, somewhere before they go nuts!! I read that mother’s of autistic children usually get PTSD, like soldiers in the war do, because we are constantly fighting battles that we do not know how to win. We have to learn a different language as autistic children think and process information differently and they get very upset when they don’t feel like they are heard or understood and many of them don’t have the capability to communicate verbally so its a struggle to figure out your child’s needs adn wants and it usually takes years of studying them to figure things out. We feel alone and lost and isolated, we don’t want to ask for help and we don’t want to bother other people, but we don’t know what to do and are often depressed and emotionally distraught. This is where a good friend can help. Seriously, a good friend is the best medicine, just a shoulder to lean on, to laugh with, to vent too. Bring them a meal, or wine,  or if you are really adventurous offer to babysit, they probably won’t let you anyways, but its the thought that counts. One simple nice gesture can do so much for a mom who is having a hard time, I think we all go through hard times, even when we don’t have disabled children, but think of the moms that have disabled children and how much MORE they have to deal with and what it would be like if you were going through that and how much you would love for a friend to reach out to you. OH… and please try to teach your kids about being nice to other disabled kids too, if everyone was nice, I don’t think moms would worry so much about their kiddos when they were playing at the playground. We don’t want your sympathy, we just really want your understanding, and maybe your time for a cup of coffee, or even a lunch. You have no idea how much your friendship means to us, the worse thing you can do is ignore us or stop talking to us altogether as it can be a lonely world and often a kind word, a simple gesture from a good friend means the world to us and is enough to bring us out of that funk that comes over us sometimes.

 

 

 

Melia Jardines Del Rey Cayo Coco Cuba

Wednesday, August 17th, 2016

I have traveled around the world and if I could travel more often I would, but this trip that I took with my best friend (who is my daughter’s God mother as well) and my daughter joined us as well this time, and it will be a trip that we will cherish and always remember.

From the airlines, sunquest to the hotel, we couldn’t have been taken better care of. I wrote to sunquest and let them know that my daughter is autistic and only 3 and I was so nervous and anxious as this was her first trip  but with everyone’s help, it ended up being an amazing trip. Sunquest, was so kind and generous and put the 3 of us up in front and let us board first and asked us many times during the flight if everything was ok, and it was, it was more than ok, it was great. Mind you, I was totally prepared, I had snacks and drinks and toys and a laptop with her favourite shows and earphones as not to bother other passengers and I had even made about 20 bags of assorted candies and chocolates with a little note attached asking everyone to understand that my daughter is autistic and if she was to act up or act out to not get upset and hopefully to understand the stress of taking an autistic child on a trip. To my surprise, my daughter Elizabeth was perfect, all the way there, didn’t make a peep, never had a problem, and helped me feel so much more at ease than I had the night before getting everything ready for this trip. I didn’t even have to give out the candy bags, and ended up giving them to the daycare in Cuba.

Elizabeth only had 2 melt downs that whole week away, and both had to do with the airport. Once we got to Cuba, I did not get her stroller until after customs and I think that tiny little space that they make you walk through and talk to them about why you came to Cuba freaked her out. She did not want to go in there, and here I am with bags and her bag and I had to lift her, and she’s not light and then had to explain to the customs officer about her disability and then we had to take pictures, but they were very nice and understanding and once they opened up that other door to let us through, Elizabeth calmed down and then I saw our stroller and got her in there a.s.a.p. and the rest of travelling went smoothly after that. The bus trip to the hotel was great too. Once we got to the hotel, we were struck but the beauty and the grand entrance of the reception, one of the biggest I’ve ever seen. I made sure to contact a hotel rep before our travels and starting talking with a wonderful and such a helpful woman by the name of Lisbet. I told her all my concerns and she took care of each and every one of them. From giving us a great room on the first floor, both near the pool and beach and then booking all our reservations with the restaurants for us as knew this was going to be hard for us since Elizabeth won’t stand in any line for anything, so this took away a lot of stress, as well as easing my worries about the daycare there, she assured me that they were very capable of taking care of my little girl if we wished to use this service. We met up with Lisbet and she showed us around a bit and explained things and she was such a wonderful person and it was so great meeting her and having her help us, and she is one of the biggest reasons why we had such a wonderful time at this resort.

Only half the resort was open, but even still it was huge, and they were still in the process of fixing things and so there were a few issues, small ones, like needing more lights at night to see, and spaces between the squares on the floor and my stroller would bump its way along, thankfully Elizabeth didn’t complain so it wasn’t much of a problem, but it was a bit of a way to walk while she kept bumping up and down,lol.

Our room was beautiful and we had a great view of the ocean but there was a field of dry mud between our building and the beach and only one way to get to the beach, so you would have to walk around to get there, which we did the first day. Since it was our first day, we had no idea that we should have got up early to get chairs at the beach and so when we saw one palapa been occupied on one side, we decided to sit on the other side, only because the stroller would not go any farther, so we were stuck and I didn’t want Elizabeth getting burned, so I had to find shade for her. Wouldn’t you know it, I had some french canadian couple, move our things while we were in the water, and when I got out to ask them, they told me that they had to get up at 6am to get the palapa and that the WHOLE palapa was theirs. I argued with them and told them that this was not allowed and they should be ashamed of themselves to take away the only shade my daughter who was autistic had, they didn’t care. They were rude and selfish and I told them that as we packed up and left. That was the only bad thing that happened the whole week though, and it was not the resort’s fault so I didn’t hold it against them. Plus, they were in the midst of building more palapa’s everyday so I knew eventually this most likely wouldn’t be a problem in the future. We then went and checked out the daycare and we fell in love with the ladies there, right away they loved Elizabeth and you could tell they would take good care of her and so we told them we would have them watch her for a couple of hours the next day.

The restaurants in this resort were AMAZING!! Each one had fantastic food and since I had been to Cuba before and knew what to expect, I was blown out of the water. Even at the buffet there was a large selection and you never left hungry. They could change things up a bit and offer different foods on different days but other than that, we couldn’t complain. The waiters were all great, big smiles on their faces, very friendly and we were well taken care of every time.

The stage and auditorium was huge, and the shows were fun, and entertaining. We met lots of wonderful people and we had such a wonderful week there, we really couldn’t have asked for a better time.

I know that this resort will only get better as they open up the other half and fix a few things and build more palapas and at least a couple of more pathways to the beach. We did get up early the rest of the week to make sure we got a palapa on the beach but it was worth it. I wish we didn’t have to do that and hopefully future guests won’t have to resort to this as long as they build lots more palapas.

We left Elizabeth with the daycare everyday for a couple of hours until lunch, and they would even take her around the resort in the stroller and by the end everyone knew who she was, and because it was her birthday while we were there, they had a huge cake for her and sang to her and it was really so sweet and the peace I had knowing that she was well taken care of was like no other. In the afternoon we would pick her up and then go to the pool and spend the rest of the day there. The pools are big and amazing too and love the beds as this was perfect for Elizabeth, she could sit and watch her laptop and then go for a swim and back to watching her movies. This was the best first trip for my little girl and I’m so grateful for all that helped make this trip so special and wonderful for her and all of us.

The only other time we had a problem was getting off the plane back in Canada, Elizabeth didn’t want to get off the plane, and had a melt down, a long one, which is unusual so we waited while they brought the stroller up to us and it took about 20 mins for her to calm down in total even after putting her in the stroller, but again everyone on board was understanding and the flight attendants helped us so much and then getting through customs so easily and quickly helped tremendously.

I will always recommend this resort. The Melia Des Jardines Del Rey, will always be one of my most favourite resorts and I hope that we can go back there again soon. Much thanks to everyone, especially Lisbet and Amarilys and Lisyen who worked in the daycare and Eliover by the beach and Randy who kept us safe in general as he was the security guard, and to everyone else who helped make our trip so special, MUCHOS GRACIAS!! Hope to see you all again real soon. Besos

Here are some pics from my point and shoot camera, I have nice images from my pro camera but this was faster,lol.

On our way to the airport in style, Elizabeth’s first limo ride.

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Guy and Mary Flor’s Wedding – MPH Photography – Toronto

Saturday, November 14th, 2015

We have had the pleasure of knowing Guy since he was in highschool with my husband, and there were 5 guys that were all best friends and would hang out all the time and once my hubby and I got together at age 17 I joined the group. We have had so much fun together over the years, so many wonderful memories, so many birthdays and Guy came to all our weddings, and now that its his turn, we couldn’t be happier for him.

Guy has always been the sweetest and most awesome person, not a mean bone in his body and a very talented musician as well. We know his whole family, his sweet loving parents and his beautiful and adorable and kind sisters Anna and Tina and who could forget Gio, he was a fresh teen when we met him and now he has grown into a wonderful young man,  I know Guy was instrumental in helping shape Gio into the fine young person he is today. Guy has been such a great friend, he has such a wonderful heart and is always caring, you can always count on him and I know just about everyone feels the same way as we do about him.  We knew once he found his soulmate that that girl would be one special bride. We love him so much that we asked him to be the Godfather of our first child George, he was the natural choice and I knew he would be a great influence on all our kids and an inspiration to them as well as someone who will be there for them and help them out whenever they need.

When Guy told us that he was getting married, we were so thrilled for him and then he asked Chris and I to photograph their wedding, it was truly an honour that he wanted us to capture his special day for him.

We were so happy to meet Mary Flor and right away we knew she was a sweetheart and felt that these two would make a beautiful couple.

We couldn’t have asked for a more beautiful day, and there was so much joy and lots of laughter all day long. We photographed them both getting ready at the Delta East and then we went to Highway Gospel church for the ceremony and after the formals we went to Ellas banquet hall, which is the same hall we had our wedding reception at, so it was nice going back there again.

What a wonderful wedding, truly it was such a beautiful occasion and it was filled with lots of love and so much happiness, old friends and family getting together to celebrate this special couple on this special day and we are blessed to have been a part of it.

Guy and Mary Flor, we wish you both all the love in the world, may God bless you both and we love you with all our hearts, thank you for choosing us to capture your special day and celebrate your love with you,  we wish you a life full of blessings and everlasting joy and happiness.

 

 

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Renaissance by the Creek – Sandra & Krzys’s Wedding – MPH Photography – Toronto

Friday, June 5th, 2015

Sandra was so nervous as she peered outside the front door with her curlers in her hair as we were walking up to the house on Saturday morning. She told us she was nauseous and if she thought about it too much then she would toss her cookies so to speak, so we hugged and I reassured her that everything was going to be wonderful and it would be the best day of her life.

We had so much fun photographing this couple during their engagement session. We did a winter e-session and although it was a bit cold out, we got some beautiful shots of these two in and around the Caledon area. We drove and would just stop wherever we thought would be nice and I would find spots and shoot. I love these types of session, they are always so exhilarating and different as you never know where you will head off to next or what the shot will look like but these two were up for anything, so off we went. Here is the sneak peek from our engagement session with them Sandra and Krzys’ Engagement session

Months later, the day of the wedding and I couldn’t wait to photograph these two young people getting married. The girls were getting ready and Sandra’s dad just constantly kept me laughing all day with his cute comments and giddy behaviour, and I could tell her mom was nervous and was doing all she could not to cry as her baby girl was getting married in just a few hours.  The maid of honour is Sandra’s aunt, Adelaide,  but I would say they are more like sisters, and she took her job seriously as she took such good care of Sandra all day long,  you could see the love these two have for each other, and Adelaide’s speech (after dinner) made me cry and was very touching. The MUA Rachel was amazing and I was loving the way she was making the girls look, they all looked gorgeous and the bride to be looked especially beautiful, her hair and makeup was perfect and I knew her soon to be hubby would be so excited when he first saw her.

The groom was nervous too of course, but full of smiles as the ceremony started at St. Peter’s http://www.saintpetersparish.com/ which is such a lovely church and time just flew by, and before they knew it, these two were married!

We went to Adamson Estates in Mississauga for the formals, and its a pretty place but they are strict about time, and only gave us 1 1/2 hrs and exactly 90 mins later they asked us to leave. Since we had time to spare before the reception we decided to go down the street to Scaddington park in Mississauga and managed to find some parts that had no bird poop,lol,  and took some more pretty pictures there as well. During the formals we usually have a bit more time to get to know everyone a little bit and we absolutely fell in love with Sandra’s grandparents who proudly told us that they have been married for over 55 years, they are such a cute couple, and so sweet and dear, and such an inspiration, I kept telling my husband that I want to be just like them when we get older.

The reception took place at the Renaissance by the creek , where they were very gracious to us and we all had a great time celebrating the love of these two people.

I want to thank Sandra and Krzystof for trusting us to photograph their special day, it was a pleasure spending the day with you both and we wish you all the love in the world as you begin this new journey together. Thank you to their family and friends who made us feel extremely welcomed and like we were family. We so enjoyed our time with all of you.

There were so many beautiful images that I wanted to share in this post, I had a hard time picking out my favourites but I hope Sandra and Krzys love the way we captured them and are hoping they will treasure these special moments caught on film forever. Enjoy your honeymoon in London and Paris Mr & Mrs. Stanko!

Dress – Felicia Bridal

Flowers – N’Dezine

Reception – Renaissance by the Creek

LA Limos

Cake – Cristina Lenza

Makeup/Hair – Rachel Renna

DJ/MC – BB Blanc

Photography – MPH Photography

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Our daughter is special!!!!

Tuesday, April 14th, 2015

The day our lives changed forever.

I’ve been wanting to write about this for a while but I guess I was and sometimes still am in shock. As a little girl I always dreamt of having children, and in my heart of hearts, I really wanted a baby girl. I wanted to dress her in pretty dresses and curl her hair and put bows and flowers in it and put her in frilly socks and cute shoes and go out and have fun shopping and do all the things that girlfriends do. I prayed for a little girl, especially after having 2 boys, and don’t get me wrong, I love my boys and always will and I have special bond with both of them, but there is something between a mom and her daughter that is really special. So when we finally tried for a third child and even though the odds were against us for after having 2 boys your chances of having a third boy are 80%, we tried anyways. I had an amnio done and I was supposed to call back that Thursday for the results so when she called me on Wednesday, I was worried and thought something was wrong. She told me everything was fine and baby was ok and she didn’t want me to have to wait until Thursday and then asked me if I wanted to know what we were having. I had wanted to have my best friend hear the results and then go order a cake with either blue or pink inside and do a big reveal but when I was asked the question, I simply could not wait and had to know right then and there.  When the words came out of her mouth that we were having a GIRL, I fell to the floor with tears in my eyes and thanked God for blessing us with her. I knew that this was meant to be and having 2 older brothers who would adore her was the best thing that could happen.
She made us wait for her appearance and I had contractions for what seemed like weeks and even went to the hospital but was told that I was not in active labour and I could either be induced or to go home, I chose to go home, bad decision, lol. I went home and around 11 that Saturday night I had contractions that were making me double over in pain and lose my voice and ended stuck in the bathroom holding on to the wall for dear life. I had called the midwife but again was told I was not in active labour as my contractions were not less than 5 mins apart but she told me she was on her way. Somehow my hubby heard me through my voiceless yelling and came and literally had to pry my hands off the wall. I didn’t think I could take a step without her coming out and dropping on the floor but somehow I made it to the bed and heard someone knocking on my door and thank God it was my midwife, she quickly checked me and told me I was 9 cm apart and had to go to the hospital, but I couldn’t move. I told her baby was coming and I wasn’t going anywhere. She quickly turned to my husband who was pretty pale and helpless and told him to call 911 and to go and get her bag from the car. He did that and the moment he left, I had a contraction and with one push, out she came. Our beautiful little girl was finally born on April 29th at 2am. I was swept up in emotion and the next few days and weeks seemed like a dream. She was pretty perfect, sleeping well, but we had some nursing issues which made me sad and caused me to have a bit of post partum I think but in time, that went away and I could finally enjoy my little girl.
Everything seemed great, and it wasn’t until just after Christmas last year when I noticed she wasn’t really speaking much. She had said a few words and then at some point, stopped. She wouldn’t look at me when I called her name and in fact didn’t have much eye contact with me anymore. After a few more months of this, I thought perhaps she had a hearing problem and took her to the doctor. When I told him that she spoke and then stopped speaking, he immediately told me to get her developmentally assessed, and I was shocked but thought nothing of it. I started doing research online and wasn’t liking what I was seeing nor did I believe it and thought that the test would prove that. Going into the hospital that day was the first time I saw a brochure on Autism and read on the back the symptoms and that’s when it finally hit me that she displayed more than a few of the symptoms but still believed that this was not what she had. At the end of the assessment, I asked the doctor what she thought, and that horrible word came out of her mouth and as she said she suspected Autism, it felt like all the blood had left my body and my head started spinning and thought I may pass out but somehow I still thought she was wrong. She told me that I would come back for the official diagnosis in a few weeks time. Just in time for new years.
I went back with my husband on Dec. 31 and I still thought that if somehow my daughter had this then she only had it mildly. She is a very happy girl, constantly smiling and laughing and sweet and adorable, and doesn’t really have tantrums, but she didn’t hug or kiss us or talk to us or make much eye contact with us and lined up her toys and flapped her arms and watched our ceiling fan spin and seemed like she was lost in her own world at times. Like her true self was locked up deep inside and she wasn’t letting anyone in to see it. We sat in those seats at the doctors and felt like I wanted the world to open up and swallow us whole as she finally told us that she thought our daughter had autism and not only had it but had severe autism, which to this day, I still think she’s wrong about but its taken me a long time to even admit that she has autism, never mind that its severe. I couldn’t believe it, and at that moment, I knew our lives would change forever.
The doctor told us that she would need assistance all her life and that we should prepare for the worse and that there was much to learn and do for our little girl. I had no idea all that went into dealing with a child with autism, but it definitely overwhelmed me. We started off 2015 with sadness in our hearts. We didn’t know what to do and thankfully in Canada we have wonderful therapists and counsellors and an endless supply of people who help while you transition into a family with an autistic child. I don’t know what I would have done without so much help, as there was so much to read and so much to learn and so much to teach her. Simple words became our focus, and every little thing she did that was new, was celebrated, every little milestone was a huge accomplishment, every eye contact was so thrilling and we had to start over, right from the beginning and teach her every little thing. Even though she doesn’t talk much, she knows how to communicate and get what she wants,  she knows how to laugh and have fun and i even get a rare hug once in a while and she’ll let me kiss her now after months of teaching her. She loves soft textures and wraps herself up in them, but hates things like sand or shaving cream. She loves dresses, but hates it if anything she wears is 3/4 lengths and she’ll fight to pull them down whether they are a sleeve or a pant leg. She hates it when I brush her hair or try to put a bow in it, she almost automatically tries to tear it out of her hair, but she loves putting on tutu’s and dancing around in front of the mirror. There were so many obstacles and so many problems to deal with and all of a sudden our days became full with therapy sessions, and speech classes and programs that would help her develop as well as workshops for us to give us ideas and techniques and help when dealing with autistic children. She doesn’t have huge tantrums or anything and doesn’t hit the wall, although last summer she was hitting her head on the floor a few times, but she has stopped that and we are starting to see all the lessons and therapy finally starting to take effect. It seems like she needs hours and hours of learning just to get one thing right. Hours and hours of saying duck or the colour blue, and she will finally say those words now, we need to put everything close to our mouths and try to get her to look at our eyes as well as repeat the word a few times before she receives what she wants, in hope that she will copy what we say, sometimes she does, sometimes she does not. She’s a great sleeper too, she goes down for bed around 8 with no problem and up at 7am with no problem, thankfully, as I have read that often autistic children won’t even sleep, or get up several times at night and stay up, so there are many things that she doesn’t have that we are grateful for. Actually, we are now grateful for the smallest little thing. Autism has made us appreciate every small thing she does and every small step she takes and we are constantly praising her daily for all her little accomplishments.
It breaks my heart that she won’t let me take pictures of her either, she’s constantly on the move and its so hard to get a good shot of her standing still or looking at me and smiling, she smiles a lot, just not when I ask her too,lol. I took so many pictures of her as a baby, and now, it seems futile to bring out the good camera, as it only makes me sad and frustrated and so I mainly use my point and shoot canon now, but I do hope that one day she will be my happy little model again and will want me to take pictures of her.
Going out is another story, telling people is hard, everyone thinks she is so cute and everyone tries to talk to her and when she doesn’t reply, I feel forced into telling them she has autism, or when we are in a restaurant and once in a while she may get a little loud and I feel obligated to tell the server that she is autistic so that they understand why she may be loud at times. Even telling family and friends was hard, and in fact, we haven’t told everyone yet. Its hard, looking at other families while they are celebrating soccer goals, or their children reading a book by themselves, or even watching children have conversations with their parents is hard, as I am constantly reminded that mine doesn’t do that. I long to hear her say the words “I love you” or even “mommy” although we think she’s said daddy a few times. My heart aches to have conversations with her and talk about our day or about a movie. My heart breaks when I can’t understand what she wants, and as she pulls my hand and attempts to show me, I have to guess as she has never really told me what she has wanted. Our lives are filled with initials now, ABA and TPAS and an endless list of letters that stand for one thing or another. She’s picky with her food and after much reading we started a gluten free dairy free diet for her and that has got to be the hardest part as she loves bread and cheese and pasta and milk and yogurt. Diapering is another issue and would rather not even get into, so you can imagine what I go through, but its tiring, as she fights me when I try to put a diaper on her and constantly wants to be naked. She’ll wear shoes but most of the time she pulls them off and socks too as she would rather be bare foot. She’s always going into the fridge and bringing out water or juice or something and tends to spill it all over the floor.   She’s a dare devil too as she is constantly wanting to climb everything and has no fear about it, which gives me a heart attack each and everyday.
I feel bad for my friends and don’t want them to have to help me watch her while at their house, so I don’t go, loud noises make her cover her ears and I think it may be time for headphones but I don’t think she will want to wear them even. Thinking of taking her to the cottage makes me nervous now as she likes to put rocks in her mouth and tends to wander off at times and we need to constantly keep an eye out for her.
Even my photography has suffered as I don’t spend as much time as I did on it. My main focus is her now, and helping her, I do a few photography sessions here and there as well as weddings, but I don’t let myself get totally booked up anymore and refer clients to other photographers now if I don’t have time, as I need to spend alot of time with Elizabeth and not sure if this will change in the future, but I’ can’t worry about that, like I said, our daughter is our main concern and all our effort and energy and time goes into helping her now.
I’m so grateful fto so many who have helped us already though, either filling out forms or giving us information or helping us to get therapy or go to classes that she needs and we have lots of wonderful therapists as well who are amazing and already we see her learning and talking more. I have a stack of brochures, pamphlets and books that I have read and still feel like I have only just begun learning about this horrible condition. Where did it come from, why my daughter, will she ever get better? For some children, they do get better, and if you looked at our daughter you wouldn’t even think she has autism until you spend a little bit of time with us and then you would notice the signs.
We will fight everyday for our precious little girl, we will do whatever it takes and as long as it takes to help her to grow and live a normal life. Doctors may say that she will never have a normal life and need help in school and even into adulthood will need help,  but I believe doctors can be wrong and I’m praying that in time our little girl will overcome most if not all her obstacles and her problems and in spite of autism will grow to be a happy normal girl. This is my prayer, my wish, my dream. I’m not dreaming of her wedding day anymore or of her having babies or choosing a career that she will love or even going out shopping and getting our nails done, I can’t think about her future as I’m unsure what it will be like, and I worry and if I think about it too much, I’ll just sit and cry the day away. So for right now, its enough if she says a word here or there, or looks into my eyes or sings a song with me or mimics me when playing a game. Small steps, tiny steps, one day at a time, we cherish every moment, every second and will continue to do so for as long as we have too. She’s our little girl, and we will hold her hand and help her every way we can. We will do speech classes and ABA therapy and TPAS program and occupational therapy and behaviour therapy and potty training classes and whatever else it takes to get her the help she needs. I want to treat her like I would our other children, like a normal everyday child, just with a bit more help, a bit more attention, a bit more of my time and my effort. I’m so exhausted and overwhelmed and I think still in shock, but that will wear off and this will become the norm and we will create a new way of living for our family. Things will change, but they will change for the better, for the love of our daughter, and we will continue to pray and to help her and to do all that we can for her and I hope that one day she will be able to speak and perhaps write her own blog and help others who are going through this. For now, we will enjoy every second, and every minute and every little thing she does will be celebrated and we will give her hugs and kisses and dream of the day she will return those hugs and kisses and then maybe one day, she’ll hug and kiss me and say “I love you mommy”.
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 Here’s a short video of our baby girl laughing, as I play with her and pretend to eat her toes, taken in March when we went to Great wolf lodge. https://www.youtube.com/watch?v=vvnk4x4SzwA