We have two children, Faith and Hailey.
Faith is now 9 and Hailey is 3, both were born in Calgary, Alberta, Canada and we have been on a journey since Faith was born. I guess I knew as a mother right away something was different but kept telling myself that everyone is different or it was a faze she was going through at the time. Somewhere in my heart, being a mother, I knew - something was just not right.
A lot of it was subtle at first, or sometimes just like a hyper kid being extra silly. When she was two she developed night terrors. She would scream out nightly which would last for anywhere from a 1/2 hour to 2 hours of screaming which we could not comfort. Many nights we spent in the emergency room or trying to find out what was the matter. She would kick and scream. It was hard to watch and if we approached her at all it would get so much worse. She could not stay at anyone's house and we were and still are constantly worried about embarrassing moments or outbursts with family and people around. Some people around us started to judge us and her - bad parenting and call them temper tantrums but having a big family and having worked in a daycare setting for a time, I had never quite seen anything like this for a temper tantrum. I had people tell me that maybe I was just wasn't handling it right, making me feel like a bad mother. The only saving grace I had was my husband who shared my concerns and assured me I was not crazy in what I was seeing. Sometimes it took a while of spending time with her to start to notice the problems - but once people started to watch her and spend some time with her they could see what we did. We had a lot of sleepless night between 3 - 4 years old only to be told by our family doctor that it was probably nothing. Nothing was done. We tried everything to keep her happy and her eating habits were very picky. Again, we thought it must just be a faze as the doctor says. I decided to quit working and stay home hoping the one on one help and attention might be what she needed.
Then when she turned 4 we were so happy for her to start Kindergarten school thinking friends and keeping busy might change somethings. The night terrors were starting to go in waves so we would at least have a week on them, a couple of weeks off - sleep occasionally without interruption. Inside, I have to admit I was scared for her starting school - I could see how she was not prepared for it but I was hoping she would prove that little voice inside of me wrong. At this point, I was still struggling to keep her going on her potty training - a few times she reverted backwards instead of forwards and there were many many accidents - most of which in public causing more whispers and sometimes just rude comments from others. Again, inside feeling like I had failed as a mother - that I had done something wrong along the way.
We put her into a Bilingual School, as french runs in the family, hoping to broaden her life but found shortly after that it was a huge mistake. At first even teachers looked at it as acting out and having issues with the transitioning between different activities in the class. After a few months and many letters home from the teachers and complaints, the teacher's told us some kids just don't take to the second language and have to be moved back into a normal school as they can't cope. They notified us that she had also failed 3 tearing tests. There were many meetings with the teacher's, counselor and resource people at her school. It took most of my time and found that it never really stopped after that - just some times of quiet but again they would always start again where we dealt with another "Faith Issue." I still wait by the phone and sometimes it feels never ending.
After waiting for month's we finally got a call from a Hearing Clinic who wanted to test Faith's hearing. We set up an appointment which was for months later and they tested her another 3 times over a two month period. A lot of waiting and worrying. It was confirmed that she had hearing loss in the right ear - so they sent us to a Audiologist/ Pediatrician at The Calgary Children's Hospital where we finally probed enough to find out that her hearing loss condition was called, "Right Unilateral Reverse sloping Moderate to Severe Hearing loss". Confusing to say the least. They also explained she had an enlarged Aqueduct. I explained to the doctor about her other issues but again he said it was probably nothing and didn't think it had anything to do with her hearing loss. I kept trying to tell him and would not give up, so he finally decided to check to see if she had any developmental issues due to her hearing loss. We waited some more for the appointment for her developmental assessment and when it finally came, the real whirlwind started...
First they decided to do a CT scan on her as they wanted to rule out a brain tumor causing the development delay issues that were arising. To hear that I was mortified. I don't think I slept for weeks until I could get into the doctor and have him actually say the words that it was ruled out. There was testing and many sleepless nights. It was a hard time. My husband worked hard to keep us a float and he couldn't keep missing work, so he would sit there worried if he couldn't be there at the appointments with us and I would sit there alone at the appointments worried and trying to deal with it all myself. It was hard on both of us.
After that, they finally got her into to see a Psychologist to have her tested. The first test came back and the woman told us she believed she had mental retardation. That was a hard appointment. They explained she might need permanent care for the rest of her life, how it was unlikely that she would go to college or get married. I couldn't believe what I was hearing. I went into a brief - very brief state of shock until as we were talking, I started to cry. It wasn't a normal cry however, it was a frustration and dread I had never felt before. How could they be sitting here telling me that my baby, my Faith, wouldn't have a full life. Not a "normal" life anyway. The two woman explaining all of this were very kind - handing me tissues and answering our questions. I was glad that my husband was at this appointment so I looked to him to see if he was handling the news better than I. Looking to him I could see that he was also in shock and he looked as white as a ghost. He looked like he was on the verge of tears but he was holding back. He was trying to play the strong one. The woman decided to do a further developmental test that might narrow down what was going on - it wouldn't be the diagnosis but it would be where she is at mentally right now. We set up the appointment and we left to the parking lot where I cried some more. My husband was very quiet. He listened as I proclaimed that, "My child will be the best she can be. I don't care if I have to sit every moment helping her get through life but I will not give up. I vowed to do what I can to make it easier for her and no doctor would tell me my child would not be normal." My husband remained quiet for a few days. I was finding myself lost in thought and learning to deal with it all. I had the depression, the anger, the frustration and finally acceptance. I approached my husband who was avoiding the conversation and asked him to talk to me. The last thing I needed was him to shut down on me. He told me he could not accept it all, but we talked it out and finally he had the tears he needed. We both accepted that it all might be true but we could love her and do what we could for her.
The test came back as, "Mixed Receptive-Expressive Language Disability". This was explained as a problem with anything verbal, receiving it or giving it. It was explained as boarder line Autistic. They talked to her school and arranged resource help for her. This was not a full diagnosis though - its partial. There is still no help for this really, no support - I knew in my heart there was more and that the fight was not over.
Since then, with much hard work, we have had many ups and downs. We found it hard to get her much help with this and very little help at all for us, so we moved to Ontario to be closer to family and try to get her some help. We had to start most of the process again out here and we are still fighting to get her help and the full diagnosis. Since more things have been noticed since she was smaller. The main reason she was never fully diagnosed is because we moved but we needed the support. Ticks have started to show up which she never had when she was younger. My husband and I do a lot of research and we are sure we will find the answers. We continue to fight to get it diagnosed as there was over a year waiting list for a doctor at CHEO - Children's Hospital of Eastern Ontario - so we continue to wait and try to cope. We are trying to get support but find it very limited or next to nothing - we just wanted to find people like us. Struggling to get through day to day and need others who understand. Sometimes the "label" holds organizations back from helping those in need. What if it wasn't Autistic, what if it wasn't diagnosed, what if it was borderline? Who do you talk to? Everyone needs friends who understand what you might be going through. Every child is different, every situation is different. I thought, wouldn't it be nice to talk, maybe even get together with others who will listen and not judge you for being a parent with a child who has a special need?
What we see now
Faith is now 8 and school is becoming too overwhelming for her. We get a lot of notes home from the teacher's, school bus and they are struggling with her in class. Her handwriting is also an issue, too large and she can't judge size or scale. We struggle at home a lot of the time too but have learned how to try and get around her mood swings She has been picked on at school and on the bus. I have done a lot of worrying about this one. I actually had a mother come up and ask me what was wrong with my child - very rudely. Faith can get very frustrated. She talks at length about certain subjects with no regard if anyone is listening which sometimes feels like a one way conversation. She rarely ever uses eye contact. She doesn't like being touched too much. My husband and I might try and tickle her for example but she will start grunting and pulling away getting frustrated. She doesn't like if someone even by accident were to startle her - frustration comes out. As long as it is on her terms and understanding she is o.k. with it. We have begun to notice ticks, such as, flapping of hands, noises, grunting, facial movements (mouth ahhing sound with funny face) and jumping around. We also have a two year old, Hailey, who has a hard time understanding what is sometimes wrong with her big sister. She tries to love her, but most times is forced back by a cold wall Faith puts up. Faith is very empathetic to others who are hurting or upset, I think by basic instinct, but when it comes to others emotions most times it frustrates her. She recognizes them but doesn't understand how to cope. She has short term memory loss - and forgets things that happened 5 minutes ago but remembers amazing facts about things years ago. She is fixated at this point on Lego, Wii, Harry Potter Lego game and videos regarding Harry Potter Lego game and empty boxes to build things. She can talk at length about Harry Potter game and has an amazing memory for this game and things around in the game. If something frustrates her, she can act out, throwing things, almost like an exaggerated temper tantrum but there is no talking or consoling her. We try to talk to her at length about behaviour but she ends up forgetting what she had done or that conversation completely. She does not make "friends" - she would rather play alone in the school ground. She will occasionally engage in activities with others but most times ends in frustration as she wants it her way and does not understand the relationship roles we all play. Most times it all confuses her. She talks to her video games making friends that more understand her. There are times when she seems more "normal" but in a pin drop everything can change and she can go into an "episode". She gives up easily, always seeing what she wants things to be in her head and when they do not end up that way, she can get very emotional and unresponsive. Like in crafts, she can have a vision of perfection and if she can not make it happen she gets very upset. She loves the workings of mechanical pinball machines, Lego building and building marble roll structures. She loves trying to build her own, but when she has that vision in her mind not happen, she gets very frustrated. Transitioning to a new activity is almost impossible but we make "visual schedules" for her and have to give her lots of warning prior. Since she has gotten a bit older she doesn't need everything listed such as eat, etc., now more playtime and extra activities schedule and we use a Time Timer" to help her learn and judge time. The "Time Timer" was the only thing that helped her try to learn some sense of time but she is still learning. On a scale of "normal" kids and Faith, she is now 8 but yet still watches kids shows such as Dora, Handy Mandy, Imagination Movers and Max and Ruby with her sister. She knows about Hanna Montana but doesn't understand it. She does not care about clothing or personal hygiene most of the time. She would forget it completely if not instructed to do it. Homework from school even as basic as adding, a question like 1+1=2 makes her happy and elated she can do it, but if you add 23+54=77 she would go into frustration. We have tried sports and science camps - some were better, but she had issues with all of them. I'd always hear about her behavior or how she would not participate. She is sensitive to loud sound - even before her hearing aid for her hearing loss. She is a picky eater, not wanting certain colors of food or textures. She will try nothing new at all. She won't wear certain colors or textures as well. She likes a fairly strict routine and doesn't like much change. If something is not occurring in 20 seconds and she sits for that time she says she's bored and will continue saying it until an activity she likes is presented. She can be very honest - almost hurtful honest and we have to be careful what is brought up around family and other people. She on occasion has told me I am getting fatter for example. She withdrawals a lot at family functions and at school If it is not withdrawing, its anxiety and frustration. At this point, we sometimes wonder if she will be able to make it through life without someone always there to guide her. Three teachers, and a couple of professionals I have approached with it all for help are sure she is Autistic - all of them see it as Asperger's without me mentioning others have mentioned the same.
I fight for her daily - it is all a learning process for her and us. We notice if we have a positive mood it helps but most times anything can set her off. It makes it hard for family outings, the grocery store/ shopping and even just home time because of her condition we do not feel we can just leave her with a sitter for our own sanity and time to regroup. It is hard to find balance in her world.. and we struggle to find it too but one thing is for sure, we love her dearly. We are such proud parents to both of our kids. I feel a bit guilty sometimes for giving Faith so much attention but I try to equal it all out somehow to Hailey. I worry as any mother will, but something I try to remember:
Today is always a brand new day, try to smile, keep breathing and people can only give me their observations - I am the one that can choose how to acknowledge those observations. Love drives me and that will never stop!
Update: November 3/ 2011
Today we went into the doctor and finally got the answers we have been seeking for 4 years. Faith has been diagnosed with "Higher Form Autism - with a Learning Disability in Math and Language". I cried when she finally said it - not out of shock - but because I have waited so long to finally have a name given to the "problem" that has plagued us for so long. I could now finally get my daughter some help. Years of waiting all boiled down to a one hour session.
I know inside now I'm not crazy, I feel a sense of validation... someone heard me... and my instincts were right... they heard me and saw we needed help...Faith will get help and we will too.. that's a huge hurdle for us.. one hurdle out of many.
When she said the words, "Autistic" all of a sudden doors of help opened up for us. Where were they yesterday - the day before? All I know is they are there now.. but the road ahead is still long.. where will it all lead?
Update: January 10/ 2013
A bumpy road but learning lots!
We are going through a lot but finally with all the programs opening up we are learning lots and things are moving quickly. IBI has been declined as she is too old now and I was worried it would make her worse pulling her out of the school she is used too. We are in ABA but waiting on that was we are in one on one Behaviourist right now. Teena see's us every week or two in our house and she is doing wonders for us and our bad behaviours and Faith. We are making strides and learning lots but it is very overwhelming. I am also taking a ASD level 1 course to learn more and try to learn as much as I can so I know what I can regarding my daughter and what she deals with. Even though all autistic people as different. You feel like you move 10 leaps forward and then 5 back but it is all a process. She is trying hard. Still a ton of appointments and running around. Just different now for before we were diagnosed. We still beg for help and have to advicate for her but we now have a way of doing it. Now that Faith is 9, it is sometimes harder and sometimes easier.. depends on the day, time... I guess it is never really easy but as I learn it makes it a bit... I don't know... more.. relateable. I can understand where she is coming from now so it makes me know why she does thinks and so it doesn't make me as upset to see her doing some behaviours and knowing how to handle some of it.. helps somehow. Doesn't mean I don't lose my mind some days and need to find quiet time... but very rarely does it ever happen. I still love my kids and she is loves for all that she does. We have had a great year of discovery. I love what she had taught me. She keeps me going each and every day. We are now working on a reward program with the behaviouralist to help with the no phyisical aggression, no self injurious behaviour, no verbal aggression and no swear... she gets a token 3 times a day if she can resist doing all 4 of those things and at the end of a week earns money toward her Minecraft if she earns so many tokens. It's a great program for her. She is doing great. I hope it continues.
Update: April 4/ 2013
Can't believe how far we have come!
We have worked very hard to get to this point but we look like we are starting to finally make some much needed progress. I am so proud of Faith and how are she has worked. There still is days but progress is wonderful - any Autistic parent can tell you that. She has finished with Teena her Behaviourlist and we continue to give her rewards for her positive behaviours and have added in teeth brushing behaviours tokens as well. It is all coming together very well. She had been taken off all help at school and fights to do it all on her own. It scares be.. but her wings have to open up and fly. I am letting her fly. She is proving to me wonderful things every day. All the hard work is starting to pay off. We do have hard days... still stimming, still the 5 point charts and times where she needs time to herself away from her 3 year old sister.. one of her triggers, so she doesn't be aggressive or swear at her. I know what all her triggers are and they can be avoided and there are tons of ways to keep both of them in a happy place if you know the trial and errors. It has taken much time. I love her so much. She has been bringing home B and A's.... yes, A's in most subjects.. but mostly math... math... her learning disablility!!! Without help! She is just amazing me.