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”.