I truly admire the Autistic mind.
I find these kids (and adults) truly fascinating. I read so much. I study. I process the information I take in. And then I sit back and watch my girl sometimes. I love learning about how her brain processes and sometimes I find myself so lost in her world that my own world seems to make less and less sense.
Sometimes her view on things are so much more practical than mine and it often makes me wonder if we overthink things as neuro-typical humans. Wouldn’t the world be an incredible place if we all said exactly what we meant and viewed everyone as equals - if we didn’t get offended or embarrassed and just let it all out and wore our hearts on our sleeves.
Wouldn’t it be cool to see the world through such a detailed and sensory orientated mind. How much is there that I must overlook as I move through my daily routines. Even though that sensory is hard for her... when she IS regulated I wonder how amazing the world must really seem to her. I have to force myself to stop and breathe in to “smell the roses” but she smells them coming from a block away.
How amazing would it be to memorize everything I’ve learned or specific phrases a person has said to me and be able to recall that memory at will. I wonder if she will lose this trait as she gets older like we do as seniors with old age.
How cool would it be... to look to the OTHER people around us in order to learn things. To spend so much time studying people’s expressions instead of their body types and outfits. To be able to watch their body language and then to try our best to mirror what they do to see how it feels on our own selves. When I’m sitting in a group of adults chatting you will find my child watching my face intently sometimes. I would love to be able to get inside her mind and to know what she is thinking.
I really look forward to the day she cohesively is able to put her thoughts into words and let us in so that she may be able to walk us all through a day in her life. I encourage her to write and read... (she loves both) so that one day this may be possible.
I love finding her patterns in her thinking as it helps me teach her. I try to focus more on helping her find comfort in her own body as opposed to being comfortable in my world. I want her to be successful but successful in the ways that she needs to feel happy with her life amidst our world.
I love when I notice similarities between her and my own self. It teaches me so much about myself. It helps me know what I need to work on for self growth. It helps me focus and be the best person I can be.
I love Autism.
Even with all it’s hard days and struggles. I really love her and everything that is her. ❤️
Monday, December 30, 2019
Friday, November 29, 2019
Braving the sensory meltdowns...
There are so many things we have avoided.
So many things we have missed out on.
Family gatherings. Town events. Festivities. Birthdays. Vacations... the list goes on.
So many situations that we avoided simply to make our life easier and to help us get through the day.
There were times we would attempt to be a part of the rest of the world.... and they almost always ended with a loud and winded ride home full of screaming and tears - usually from the both of us.😏
So many things we have missed out on.
Family gatherings. Town events. Festivities. Birthdays. Vacations... the list goes on.
So many situations that we avoided simply to make our life easier and to help us get through the day.
There were times we would attempt to be a part of the rest of the world.... and they almost always ended with a loud and winded ride home full of screaming and tears - usually from the both of us.😏
With our diagnosis came therapies. And with therapies came the tools and the confidence to tackle BOTH of our anxieties - one step at a time.
I learned to prep her. Prep her some more. And some more. Always have a detailed game plan. I learned there was no such thing as over planning.
I always help her design her escape route to a quieter place and our calm down plan if it gets to be too much and we need a break. We pre plan a few sensory items to take ahead of time. I include her in the planning as much as possible. I also learned that deviating from that plan, is almost always, a huge recipe for disaster. We cannot spring in any last minute decisions or surprises.
I always help her design her escape route to a quieter place and our calm down plan if it gets to be too much and we need a break. We pre plan a few sensory items to take ahead of time. I include her in the planning as much as possible. I also learned that deviating from that plan, is almost always, a huge recipe for disaster. We cannot spring in any last minute decisions or surprises.
Tonight we attended one of the biggest events in Summerland - The Summerland Festival of Lights. They estimated 15 thousand people this year. And for the Okanagan it was a very cold day! This is a big event with lots going on where there is a big count down to turn on the lights for downtown.
Our game plan!
4:30 eat dinner.
4:30 eat dinner.
5pm - start the long process of layering and getting dressed.
5:30 - walk down to the park
5:45 Meet her school at the stage for school performance
6:00 school performance
6:10 warm up at the church where it’s quiet, and warm for arts and crafts.
7:00 back to the Center for countdown and light up
7:05 fireworks! We brought noise cancelling headphones
7:20 - HOME!
I went over this plan with her including times and she memorized it instantly and definitely knew when 5pm was approaching to get started.
I went over this plan with her including times and she memorized it instantly and definitely knew when 5pm was approaching to get started.
We talked many times about how if her little brother (who is 3) started crying and wouldn’t stop that we would need to head home and immediately cancel the rest of our game plan. The one variable that we could not control and it was going to be cold and uncomfortable. The main thing was for her to sing and perform!
We talked about how the church would be quiet and there was a washroom there - usually the one place we can always go to get away from the crowd if needed. We talked about breathing and calm down techniques. And we talked about how once sensory got to be too much we could immediately go home.
So at 5:30 we were outside all bundled and ready to go!
I am so proud of my kiddo and how far she has come. She did AMAZING. She was happy. Killed it on stage. She made her friend a beautiful candy cane at the arts and craft table to cheer her up after a sad moment. We rushed outside for the countdown and light up and stood in a massively busy crowd.... cheered when the streets lit up and then thoroughly enjoyed the fireworks.
For a sensory kid... I cannot believe how amazing she did.
And this reaction to the fireworks made the last 7 years of struggles to get this far worth every second. I spent most of my time watching HER watch them and it was the best experience ever!
So good... that we decided to deviate from our plan and play one of the games - which equalled to over sensory and stimulation which led to the inability to make a decision which led to wailing and tears... so we made a hasty exit home. (At 7:45 she was in bed which was right on time with her bedtime schedule so it actually worked out quite well).
Side note: She has been very aware of her heartbeat when she has sensory meltdowns lately. She mentioned how fast her heart was beating when we were home so we did some deep breathing at home so she could see how it helps slow down the beats. We also talked about how sensory and anxiety controls our heart sometimes. (I hope those of you reading this realize how amazing that is for a kid on the spectrum that is normally not self aware!)
But... the hard end of the night aside....... the look of pure joy on this kids face made the night for me......
So I’m reminded to stay strong and remember that we ARE making progress... To celebrate each of these small victory steps. I definitely told her as I was putting her to bed how darn proud of her I am and how much her being happy makes me happy.
Thursday, August 8, 2019
The Day Our Lives Changed
February
25
2019
Some people remember dates for birthdays. Weddings. Graduations. Tragedies.
And me....?
I remember the day we got our ASD diagnosis.
And how could I not remember? After 4 years of advocating, 18 months of waiting for the referral, and another 6 months for the actual appointment date......when they call you with that date you don’t forget. Or Cancel. Or reschedule. You do, however, stress, agonize and over prepare.
I told Sophie-Lyn that she had an appointment to see a doctor that was going to tell us what kind of brain she had. I told her how much of a benefit this was going to be since it would tell us how we could help her body in the best way! She asked me for as many details as her little brain could muster up questions for. Where the appointment was. Was the doctor a boy or girl. What was her name. Would she get a needle. What would they do. What would the chairs look like? I told her what I knew and also told her they would talk and maybe do some puzzles. I honestly had no idea what they would do.
I was so worried that they weren’t going to see what I had been seeing for the last 4 years. After all... how could they? 90% of the time she presented as a happy, typical child. It was only noticeable if you took the time to look really closely at her traits. Or when she was struggling. It was the 10% of struggling that I really needed them to see in order to get this diagnosis - and it was the part they were least likely to see in a quiet room in a 1:1 setting.
I debated pulling her off the diet I knew would send her over the edge. I debated taking her off her supplements a few days before going in. I debated feeding her a big fat juicy popsicle full of red dye.
In the end, I did take her off her supplements for the day but I couldn’t bring myself to do any of the latter and risk sending us back into the downward cycle that had gotten us to that point in the first place. Even if it was temporary... life was not really manageable before that diet.
I did show up to the appointment armed with teachers reports, BI observations at school, and a list of very well researched reasons I believed that pointed to her being on the Autism Spectrum.
The morning before the appointment I sent her to school anyway determined to keep her morning schedule as consistent as possible until I needed to deviate. By 10am that morning I had gotten a text from the teacher... She was not a happy camper.
I picked her up and as soon as she got into car she was happy as pie. She brought her baby blanket (which was not typical for outings) and her stuffy and we were off.
We were sitting in the waiting room and she started to get slightly agitated with nerves. I was trying not to calm her down too much in order to help the assessment along when the time came.
When the dr came out to talk to her she instantly hid under her blanket and wouldn’t make eye contact or say hello. The lady was good... she introduced herself to her stuffy and had her out from under the blanket in less than 2 minutes and right into her office well I sat and waited in the waiting room flabbergasted. My first thought was “Well SHIT”. That was a little too easy for them. Lol
I sat in the waiting room a bundle of nerves for 45 minutes while I could hear her over exaggerated laughter and non stop chitter chatter. All I kept thinking was - this lady better know she she is doing! lol
My mom was with me. I can’t speak for her but I’m pretty sure we were on the same wave length. I told her I still get my turn to convince them
So not to worry. This Mama was definitely on a mission!!!
When I got called in my mom took her outside to keep her busy and I sat down and the doctor seemed thoroughly amused by the encounter but the first thing she said to me was “I assume your after very high functioning ASD?”
I began to breathe a little. Yes. High functioning ASD. You are very good by the way... normally In waiting rooms and doctors offices she screams and melts down. I showed her the text from that morning.... you would never believe that this was the same kid you just had sitting in here just now.
We talked. She asked some pretty dead on questions. Did I ever teach her to make eye contact. She will make it but won’t hold it. (YES!! She saw it!). What is with that over done laughter? (A show... just for you!) She asked questions about some of the things she had told her. She said she talked about her brother like they were the same age - but she realized farther along that her brother is only 2.
I got my chance to put up my list.
2.5 hour melt downs.
Sensory processing disorder - scared of bathrooms etc.
Delayed motor skill development
Lack of natural empathy that needed to be taught
Inappropriate responses to emotion or serious situations.
Inability to adapt to change.
Schedules.
Lists.
Consistency.
Melt downs.
Melt downs.
Melt downs.
I was only in there for 25 minutes.
20 minutes later I got the diagnosis!
AUTism Spectrum disorder.
This is not a child that is refusing to behave in her environment. It’s a child that can’t handle her environment and can’t regulate.
I hugged her on my way out the door.
Your changing our lives! I told her.
Yes! finally!
4 years.
2 years of waiting.
Finally... help was in the light!
It was.. and still is... one of the biggest turning points in the game for us.
If I can give you any advice - it’s to look at this diagnosis like only a positive. It means people will understand your child. It means you can pick up the phone and talk to someone and actually get advice. It means they’re are going to be people around you that will change your lives.
Friday, July 12, 2019
Our Autism “Diet”
When it came to raising Sophie-Lyn, diet for us was always HUGE.
If I remember correctly, she was younger then 2 when the rashes around her mouth started popping up and we somehow linked the allergy to artificial dyes.
In this day and age it’s fairly common knowledge about how dyes have adverse health effects or how they cause hyperactivity and behavior problems in children. I can tell you that if you are on the line about going dye free then I challenge you to cut them out for only one week, and then give your kid a big ole red popsicle and then sit back and watch the fireworks begin! I promise that you will definitely notice the difference bringing the dye BACK in almost immediately and this will make you a believer in the power of dye!
I remember the pediatrician said to me at one of our first appointments “well if she is allergic to dyes then she is most likely allergic to preservatives. They are basically the same thing". And I thought hmmmmph. GREAT. Cutting dye on its own was a huge undertaking. Preservatives is another huge one to cut out completely. We were pretty healthy in our eating habits but I honestly could never see myself commiting to make everything she put in her mouth from scratch. Life was busy enough! I didn’t really bite that bullet until much later.
I mention in another post about the day my daughter was laying under the table and telling me her whole body was angry - while crying and writhing around: this was honestly the turning point for me. It was the day I knew she couldn’t continue to live this way and that we needed to make some serious changes. And that I needed to do whatever it took to find answers no matter how many people turned me away again.
We found ourselves in the office of a wonderful Naturopath Doctor that does something called vega testing. It was no surprise that she found the dye allergies my daughter had right away along with an army of other things I had no idea about. She explained to me that when bodies are too busy rejecting and trying to process foods it cant handle that it will actually effect her body being able to absorb the nutrients it needed efficiently. It turns out that when this happens it often comes out as behavioral problems as it can effect everything in the body including brain chemistry. When I left that office I had a hefty list of preservatives and dyes we needed to avoid and also the foods they tend to be in. On this list there was all the artificial dyes, and a handful of preservatives, msg and SUGAR. It was a huge list. The sugar one was the one that really rocked me and kind of set me into a panic. There is sugar in EVERYTHING packaged or canned or jarred. Its a massive undertaking for anyone to adjust their diet this way and I had no idae how I was going to get my picky 5 year old to eat this way when she has never touched a carrot or salad in her life. And the kicker? It was almost exactly one week until Halloween.
When we got home I sat Sophie-Lyn down and showed her the list.
“Honey, Dr Karin knows why your body is feeling so angry all the time.
She was so sad. What kid doesn't love ice cream and cake? But I told her that even though she couldn’t eat a lot of these things anymore that we were going to find the alternative for everything - that she would just have her own bread and yogurt etc. I promised her we would find new recipes for treats so she wouldn’t ever be left out. I told her it was going to be hard but that we would do this together and I promised her that it was going to help her body and her brain! I enticed her with the idea of always having her own special food.
Together that night we went through everything in the fridge and cupboards and read every ingredient. Other than real fruit, real meat, cheese, pasta and rice there wasn’t much left in our cup boards she could eat. We went shopping the next day at the natural foods store and found the basics we needed - it’s amazing what sugar hides in! We did manage to find cereal sweetened with coconut sugar. $7 jam that had nothing added except fruit. Plain yogurt that we sweetened with only honey. (Amazing when adding frozen berries btw). Chocolate chips sweetened with stevia! Organic rice crackers. Hot dogs that would split open if you cooked them even a minute too long. Coconut bread. The first recipe I ever made for her to eat as a treat was energy bites! We ate them all within an hour and had to make another batch.
Four days later, on a completely clean diet, and I swear to you it was like I had a completely different kid. She seemed more settled and grounded. She was less agitated. She was less antsy. She was sleeping better. She was making jokes and laughing at herself - and in that moment I actually could not recall the last time she had EVER made a joke or even giggled like she was. I was overwhelmed with emotion and GUILT with the fact I should have done this completely healthy eating thing a lot sooner. I knew she was reacting to dyes... and I knew I couldn't feed her complete crap. Why didn't I clue into this sooner? Even the teachers and other parents were commenting at school the change in her. She was also having an easier time regulating back from her melt downs and they were less frequent and were not happening over such minor things anymore.
If I remember correctly, she was younger then 2 when the rashes around her mouth started popping up and we somehow linked the allergy to artificial dyes.
 |
| First sign of food reactions on her cheeks. |
I remember the pediatrician said to me at one of our first appointments “well if she is allergic to dyes then she is most likely allergic to preservatives. They are basically the same thing". And I thought hmmmmph. GREAT. Cutting dye on its own was a huge undertaking. Preservatives is another huge one to cut out completely. We were pretty healthy in our eating habits but I honestly could never see myself commiting to make everything she put in her mouth from scratch. Life was busy enough! I didn’t really bite that bullet until much later.
 |
| The dreaded red dye rash around the mouth. |
I mention in another post about the day my daughter was laying under the table and telling me her whole body was angry - while crying and writhing around: this was honestly the turning point for me. It was the day I knew she couldn’t continue to live this way and that we needed to make some serious changes. And that I needed to do whatever it took to find answers no matter how many people turned me away again.
We found ourselves in the office of a wonderful Naturopath Doctor that does something called vega testing. It was no surprise that she found the dye allergies my daughter had right away along with an army of other things I had no idea about. She explained to me that when bodies are too busy rejecting and trying to process foods it cant handle that it will actually effect her body being able to absorb the nutrients it needed efficiently. It turns out that when this happens it often comes out as behavioral problems as it can effect everything in the body including brain chemistry. When I left that office I had a hefty list of preservatives and dyes we needed to avoid and also the foods they tend to be in. On this list there was all the artificial dyes, and a handful of preservatives, msg and SUGAR. It was a huge list. The sugar one was the one that really rocked me and kind of set me into a panic. There is sugar in EVERYTHING packaged or canned or jarred. Its a massive undertaking for anyone to adjust their diet this way and I had no idae how I was going to get my picky 5 year old to eat this way when she has never touched a carrot or salad in her life. And the kicker? It was almost exactly one week until Halloween.
 |
| Copy of the first list of preservatives and dyes to avoid. |
“Honey, Dr Karin knows why your body is feeling so angry all the time.
She was so sad. What kid doesn't love ice cream and cake? But I told her that even though she couldn’t eat a lot of these things anymore that we were going to find the alternative for everything - that she would just have her own bread and yogurt etc. I promised her we would find new recipes for treats so she wouldn’t ever be left out. I told her it was going to be hard but that we would do this together and I promised her that it was going to help her body and her brain! I enticed her with the idea of always having her own special food.
Together that night we went through everything in the fridge and cupboards and read every ingredient. Other than real fruit, real meat, cheese, pasta and rice there wasn’t much left in our cup boards she could eat. We went shopping the next day at the natural foods store and found the basics we needed - it’s amazing what sugar hides in! We did manage to find cereal sweetened with coconut sugar. $7 jam that had nothing added except fruit. Plain yogurt that we sweetened with only honey. (Amazing when adding frozen berries btw). Chocolate chips sweetened with stevia! Organic rice crackers. Hot dogs that would split open if you cooked them even a minute too long. Coconut bread. The first recipe I ever made for her to eat as a treat was energy bites! We ate them all within an hour and had to make another batch.
Four days later, on a completely clean diet, and I swear to you it was like I had a completely different kid. She seemed more settled and grounded. She was less agitated. She was less antsy. She was sleeping better. She was making jokes and laughing at herself - and in that moment I actually could not recall the last time she had EVER made a joke or even giggled like she was. I was overwhelmed with emotion and GUILT with the fact I should have done this completely healthy eating thing a lot sooner. I knew she was reacting to dyes... and I knew I couldn't feed her complete crap. Why didn't I clue into this sooner? Even the teachers and other parents were commenting at school the change in her. She was also having an easier time regulating back from her melt downs and they were less frequent and were not happening over such minor things anymore.
 |
| Happy Girl at Halloween - Even with no sugar! |
We attended the school Halloween party prepared with our own snacks that consisted of a can of Zevia, homemade popcorn, a Lily’s chocolate bar (stevia) and some plain potato chips. She sat at the table and had her fill and then went and played games and won candy that she happily gave away to her friends. We could not believe how maturely she handled the situation. When someone asked her about her new eating plan she told them proudly “I have my own special snacks that don’t make my body upset”. I told her how proud I was of her!
On Halloween night she chose to trick or treat for fun. I had found her some naturally sweetened cotton candy from the maple store here in town, a maple sucker and some natural licorice made with raspberry puree. She was happy as pie to leave her candy for the "switch witch" and have her own treats to indulge in. She went to bed that night as one of the only kids in the neighborhood without a sugar-high paired with a calm body and mind.
Fast forward to today, 2 years later, we also have her off dairy and gluten at the recommendations of the same Naturopath. (The first time I punched sugar, dairy, gluten and dye free into google and the “autism diet” popped up I nearly fell off my chair as all of this had happened pre-diagnosis for us. Who knew?!!)
It’s been a huge learning curve. I have also changed my own eating habits after everything I have learned from my kid. What we put into our bodies definitely can make a huge difference as to how it feels on the outside! I have more energy. I have less anxiety. I feel like I have my depression issues in check. I am less bloated! My periods are easier with less mood swings. I cannot believe what a difference clean eating makes!
The way I see it is this:
Our ASD kids come packed with some huge sensory overloads. They feel every sensation and every vibration to the absolute extreme. Because of this their bodies are over sensitive. If they have a tummy ache from gluten they feel it excessively. If they are over stimulated from a sugar rush their senses are overly heightened and it’s too much for them. If they are reacting to something they literally feel it in their whole body.
LET ME TELL YOU SOMETHING ELSE- they feel it in their whole body when their body is happy too. And it definitely shows! Life might be busy but nothing is ever to busy to keep me from making sure her body is able to keep that big ole smile on her face!
On Halloween night she chose to trick or treat for fun. I had found her some naturally sweetened cotton candy from the maple store here in town, a maple sucker and some natural licorice made with raspberry puree. She was happy as pie to leave her candy for the "switch witch" and have her own treats to indulge in. She went to bed that night as one of the only kids in the neighborhood without a sugar-high paired with a calm body and mind.
 |
| My girl and I with happy bodies! |
It’s been a huge learning curve. I have also changed my own eating habits after everything I have learned from my kid. What we put into our bodies definitely can make a huge difference as to how it feels on the outside! I have more energy. I have less anxiety. I feel like I have my depression issues in check. I am less bloated! My periods are easier with less mood swings. I cannot believe what a difference clean eating makes!
The way I see it is this:
Our ASD kids come packed with some huge sensory overloads. They feel every sensation and every vibration to the absolute extreme. Because of this their bodies are over sensitive. If they have a tummy ache from gluten they feel it excessively. If they are over stimulated from a sugar rush their senses are overly heightened and it’s too much for them. If they are reacting to something they literally feel it in their whole body.LET ME TELL YOU SOMETHING ELSE- they feel it in their whole body when their body is happy too. And it definitely shows! Life might be busy but nothing is ever to busy to keep me from making sure her body is able to keep that big ole smile on her face!
Tuesday, July 9, 2019
Me Too.
If you had told me, 7 years ago, that this would be our lives I would have laughed. I would have told you that you were crazy. I know what your thinking... “Me Too!” right? We ALL think that as Mom’s sometimes.
I gave birth to the worlds most beautiful little baby. I was in love with her from the moment I laid eyes on her. I would just sit, and hold her, and stare at her and let that love grow and consume me. I know what your thinking again... “Me Too!” There is nothing like a mother’s love.
When we took her home and she kept me up late nights and barely slept and other Mom's also told me "Me Too". We were all tired. Lots of people had advice for the hard months that were to come. The early months are the shortest but the longest. Purple Crying. Sleep Training. Cry It out. We tried it all. Nothing seemed to soothe her in those long hours. Sometimes not even nursing. "Me Too" What I didn’t know here was, “me too” didn’t necessarily mean for 6-8 hours with little to no break and sometimes for days on end.
This was the life before we knew about sensory kids and sensory processing disorder. Before we knew about food sensitivities and allergies. There were times she cried for hours before we knew anything about sensory processing or sensitives. I became a google expert on sleep associations, acid reflex, colic, teething..... and running the vacuum in the same room to get her to sleep. "Me Too". Yep. We all did those things.
She was a baby that could go from extremely happy to upset in a flash for no apparent reason. She was healthy. She laughed. She developed skills on schedule. I was so Tired. "Me Too"
She started to have tantrums at 8 months. I still have a video that I often reflect back on. I don't remember anything happening to make her upset other than she wouldn't accept comfort but she wouldn't let me leave her either. She was inconsolable. I would go on an emotional rollercoaster that would take me from feeling empathy, to frustration to having emotional upset along with her and longing for the day she would be old enough to just tell me what was wrong. "Being a Mom is so hard." I would say holding back tears at baby group. "Me Too" They would all say. And It was hard. For all of us. I do get that.
She didn't like physical comfort. She didn't like to be touched. She was so little and it broke my heart that she wouldn't cuddle with me. I remember asking my mom once when she would start to give me hugs.
We went through terrible two's. “Me Too" And the horrible threes and the "F*@*% Fours". "Me Too.
Her speech and language were amazing. So many people could not believe her ability to put together sentences at such a young age. One lady once told me her eyes looked like she has an old soul. (I also googled that too hoping that this would be the answer to the restlessness that she seemed to have all the time.) She had a temper. Even at 2 years old we had what I would call "Mommy Battles" and I would lay the groundwork for the house rules (like no throwing toys or food) that sometimes would end up causing fits that would last hours. Hold mommy's hand when we are crossing the road. The rule at the store was you either ride in the cart of you hold my hand - you may not run off on your own. We sang clean up songs. Once a pattern was established I would never have to teach her that rule again. She was a creature of habit. I just needed to wait out her stubbornness sometimes to get to that point. We created set in stone bedtime routines. One time when she was 15 months old she hit me across the face and bit me and screamed right in my face because I told her NO. "Me Too"
She never attached to anything for comfort. Nothing soothed her. She was two and a half. I created a blanket attachment for her by putting the blanket between us every time I nursed for months before even trying to wean. It took me 3 months and HOURS of laying with her while she cried to sleep to wean her from nursing to sleep. She still has her blanket to this day and still uses it for comfort and every time I see it come out I can't help but feel a twinge of guilt for the hard weaning process. Weaning is hard for everyone right? Yup.....“Me too”
My husband worked out of town. It was very hard to leave her with anyone as her attachment was so strong to me. (You guessed it....... "Me too". ) We saw cranial sacral massage therapists, natural paths and chiropractors. She just never seemed truly happy or settled. She was a very smart little girl. She walked, talked, ran and jumped. She was just never content and she never slept well.
I started her in preschool when she was 3. She hated going. The entire morning leading up to drop off time (at 1pm) was terrible as she would resist getting dressed or even getting into the car. The daycare teacher (An amazing lady) would pry her off of me screaming and sometimes come out to the car to get her trying to make the transition easier on me as she knew my heart was breaking even though I desperately needed just a couple hours break. They told me once I dropped her off and she had her moment she would be fine and happy. I would pick her up and she would be exhausted. After 4 months with no progress in making the transition any easier.... I decided that the hard mornings and the emotional stress it was causing both of us wasn't worth the 2 hours break and I pulled her from pre-school. The teacher asked me if I wanted a referral to OSNS (Child Youth Development Center) and never told me why. I declined although I would spend years coming back to this moment. I declined because I was not the only mom going through these very typical struggles with my daughter. "Me Too". Right?
When she was 4, Four hour melt downs started. When she would get violent and attack me and I would put her in her room and I would sit on the other side of the door and cry while she tore her room apart and screamed. She put her first hole in the wall. I sold toys she abused while she stood at the top of the stairs and waved goodbye to them like there was nothing wrong with this situation. She would wake up in the middle of the night screaming and not go back to bed for hours. Night terrors? "Me too". But I don't believe to this day she was ever having night terrors. Our downstairs tenant once asked me if I had ever taken her to see a doctor as she had never heard a kid have these types of melt downs before. I shrugged and wiped tears and told her lots of mom's tell me "Me too".
She was scared of bathrooms. Like in a terror kind of way. She would hold her bladder until her stomach hurt rather than use a bathroom that wasn't at our house. I spent a lot of time making schedules and reward charts. We used visuals. We scheduled everything. Every morning I prepared her for what lay ahead of us for the day and if I was going to make any changes to our plans she needed as much notice as humanly possible. You couldn't decide to go through drivethru somewhere on the way to the grocery store without risking a melt down. She had a very limited palate of foods she liked to eat although not as limited as some kids I had met. Every birthday party or event we attended consisted mostly of tears and stress and if you caught a glimpse of us it was usually sneaking out the back early both of us miserable and stressed. I learned about Sensory Processing Disorder and things began to make a little more sense. Noise. Touch. Yep. Our first missing puzzle piece. We made the connection to dyes and behavior with the help of a rash that used to appear around her mouth whenever it touched her skin and we eliminated all dyes immediately after researching and started down the long road of reading and learning to identify hidden ingredients in labels.
I got pregnant when she was 4. Her ability to follow house rules when it came to safety saved me during the first months while I was sick and tired. She would rub my back while I was puking and bring me crackers and ginger-ale because that's what she saw me do the last time. She really has a soft side to her that I really love and our bond is amazing. Her melt downs got more frequent and more longer in duration. I called Child Development bawling one day begging them to help me. They refused as she would be starting school in the fall and they don't help school age children. I did end up with a support worker that would visit weekly but other than being a great support and counselor for me nothing she ever suggested ever seemed to quite resonate with what was happening. She was amazing at helping me see past her behavior and onto the kid that I raised and loved and for that I will forever be in her favor as this was the year I felt like I was losing myself and my little girl and it was devastating.
When she was 4 I had my second baby. Another beautiful and perfect baby boy. Sophie-Lyn was in the room with me when I gave birth and I had spent a lot of time preparing her for the day. We covered every topic imaginable and the process helped both me and her prepare. Everyone was amazed at how well she handled the situation and how much she understood. She explained to the midwives that I was having a contraction when I couldn't talk (I laboured so well that sometimes they couldn't tell). After finding out I was at 8 cm she asked the midwife excitedly "Does that mean ACTIVE labor?" She was an absolute doll. She asked to hold the baby right away when he was out - but she did request I clean him off first. (LOL)
THIS was the most easygoing newborn in the whole world. He had hard nights. If we drove he slept. If I ran the vacuum he slept. If I wrapped him in a baby sling he slept. All the tips and tricks worked the second time round. Hmmm.
We got a new family doctor with the arrival of our new bundle. Sophie-Lyn had massive melt down at the office when we went in for the meet and greet. She was rested. She was fed. She was happy on the walk there. Then as soon as the doors closed behind us all hell broke loose. She didn't want to go in. She didn't want to go home. She didn't want to stay. She didn't want anything. Not Me. Not Anyone. These public outbursts are the ones I used to dread the most as she was STILL the loudest kid we knew and I hated having an audience while I would be fighting to hold myself and my patience together. At one point she flipped her manner and had a great conversation with the doctor while I was out of the room. The doctor told me later that her speech was fabulous and that I was dealing with a very intelligent little girl that was able to manipulate.
Kindergarten arrived. Transition issues. Daily. Over and Over. She did alright during the day but the drive to school was hard and there were lots of prying off of hands and at drop off and quite often the drive home also consisted of exhausted melt downs. She was scared of bathrooms. The teacher wasn't concerned. Sometimes she would shut down and not join in. The teacher thought she was fabulous.
One day after a close friends birthday ended badly on our part we left early and when we arrived home she was laying under the table sobbing and told me, "My entire body feels angry and I don't know why". I lay with her on the floor rubbing her back while my heart broke. This day started the first of many of a spiral of phone calls and emails trying to get SOMEONE to help. I learned that no one really recognized sensory processing as an actual disorder that needed help. I waited 8 months for a referral to a pediatrician. Because sensory tends to cause anxiety (and vice versa) I tried that route as well and waited hours at a walk in mental health clinic for kids only to be told their programs start for children ages 8 and up.
My mom begged me to try another natural path. I didn't want to waste any more money. She paid and drove us 40 minutes away to Kelowna. This natural path did something called Vega Testing. She told me she reacts violently to sugar, dyes, preservatives, and possibly gluten and dairy. I couldn't imagine possibly taking her off all those things with such a picky eater as what in the heck would be left for her to eat???! (Later I would learn that this diet is actually considered the Autism Diet and this was going to be a substantial point in our Journey.) I asked her about Sensory Processing Disorder. "That's high functioning Autism" she told me. "but she is so social" I said. "It presents differently in girls". She told me. I cried all the way home. It wasn't the thought of Autism that upset me. I had no idea how I was going to put her on this diet. Cutting out dyes was hard enough. I didn't have time or energy to create everything from scratch for her or the money to eat all organic. I was panicked and stressed. This was one situation where I was NOT hearing "Me Too".
But I did it. I sat her down. I told her I knew what was making her body angry. We talked about food and body health. We talked about how even though she wouldn't be able to eat any of the things we had we would find other alternatives to her favorite foods that would be just as good. I told her we were going to make her body feel happy. And she agreed to team up with me and make it happen. 4 days later I made a comment about something that I don't remember and she bust out laughing and continued to bug me about it. This was the first time I remember her laughing and making a joke in YEARS.
It was a turning point for me. I researched autism. I researched high functioning autism in girls. Pieces slowly were falling into place. I reached out to other mothers that were saying "Me Too". Only for the first time in my child's life, I actually felt like they really did understand.
As soon as I saw the pediatrician I pushed for the referral for Autism. (I finally got into see him right before her 6th birthday). She had begun having melt downs at school and spent portions of the day hiding in the boot room and being unconscionable. He wasn't keen on giving the referral to me. He suggested the books "A spirited child" and "the Sensational child" but said for Autism she simply didn't present. I told him I wanted it anyway. I ended up starting the long process and getting an appointment for 18 months in the future. I began to hire specialists for what we could afford out of pocket. The first specialist i talked to on the phone that had experience with autism changed my world. She could explain mysteries about my kid to me before she had even met her. A puzzle piece LOCKED dead into place. I finally felt like I was on the right track with this kid.
Febrary 26th, 2019, when Sophie-Lyn was 7 years old at 2:19 pm we got the diagnosis of AUTISM. I felt an overwhelming sense of relief and instantly let go years of pent up guilt.
I hugged the psychiatrist on my way out the door and thanked her for changing our lives!
And so....... It started.
Our Journey into our new normal and our new lives!
And one thing is for certain.
I will NEVER allow someone to tell me "Me Too" when I am searching for something lurking in my maternal instincts. I learned to trust my instincts. I learned that I wasn't a failure. That I haven't done anything wrong. Actually.... I had been doing something right all along.
I'm a Mother of a child with Autism.
Me. Too.
And our lives are just finally getting started.
I gave birth to the worlds most beautiful little baby. I was in love with her from the moment I laid eyes on her. I would just sit, and hold her, and stare at her and let that love grow and consume me. I know what your thinking again... “Me Too!” There is nothing like a mother’s love.
When we took her home and she kept me up late nights and barely slept and other Mom's also told me "Me Too". We were all tired. Lots of people had advice for the hard months that were to come. The early months are the shortest but the longest. Purple Crying. Sleep Training. Cry It out. We tried it all. Nothing seemed to soothe her in those long hours. Sometimes not even nursing. "Me Too" What I didn’t know here was, “me too” didn’t necessarily mean for 6-8 hours with little to no break and sometimes for days on end.
This was the life before we knew about sensory kids and sensory processing disorder. Before we knew about food sensitivities and allergies. There were times she cried for hours before we knew anything about sensory processing or sensitives. I became a google expert on sleep associations, acid reflex, colic, teething..... and running the vacuum in the same room to get her to sleep. "Me Too". Yep. We all did those things.
She was a baby that could go from extremely happy to upset in a flash for no apparent reason. She was healthy. She laughed. She developed skills on schedule. I was so Tired. "Me Too"
She started to have tantrums at 8 months. I still have a video that I often reflect back on. I don't remember anything happening to make her upset other than she wouldn't accept comfort but she wouldn't let me leave her either. She was inconsolable. I would go on an emotional rollercoaster that would take me from feeling empathy, to frustration to having emotional upset along with her and longing for the day she would be old enough to just tell me what was wrong. "Being a Mom is so hard." I would say holding back tears at baby group. "Me Too" They would all say. And It was hard. For all of us. I do get that.
She didn't like physical comfort. She didn't like to be touched. She was so little and it broke my heart that she wouldn't cuddle with me. I remember asking my mom once when she would start to give me hugs.
We went through terrible two's. “Me Too" And the horrible threes and the "F*@*% Fours". "Me Too.
Her speech and language were amazing. So many people could not believe her ability to put together sentences at such a young age. One lady once told me her eyes looked like she has an old soul. (I also googled that too hoping that this would be the answer to the restlessness that she seemed to have all the time.) She had a temper. Even at 2 years old we had what I would call "Mommy Battles" and I would lay the groundwork for the house rules (like no throwing toys or food) that sometimes would end up causing fits that would last hours. Hold mommy's hand when we are crossing the road. The rule at the store was you either ride in the cart of you hold my hand - you may not run off on your own. We sang clean up songs. Once a pattern was established I would never have to teach her that rule again. She was a creature of habit. I just needed to wait out her stubbornness sometimes to get to that point. We created set in stone bedtime routines. One time when she was 15 months old she hit me across the face and bit me and screamed right in my face because I told her NO. "Me Too"
She never attached to anything for comfort. Nothing soothed her. She was two and a half. I created a blanket attachment for her by putting the blanket between us every time I nursed for months before even trying to wean. It took me 3 months and HOURS of laying with her while she cried to sleep to wean her from nursing to sleep. She still has her blanket to this day and still uses it for comfort and every time I see it come out I can't help but feel a twinge of guilt for the hard weaning process. Weaning is hard for everyone right? Yup.....“Me too”
My husband worked out of town. It was very hard to leave her with anyone as her attachment was so strong to me. (You guessed it....... "Me too". ) We saw cranial sacral massage therapists, natural paths and chiropractors. She just never seemed truly happy or settled. She was a very smart little girl. She walked, talked, ran and jumped. She was just never content and she never slept well.
I started her in preschool when she was 3. She hated going. The entire morning leading up to drop off time (at 1pm) was terrible as she would resist getting dressed or even getting into the car. The daycare teacher (An amazing lady) would pry her off of me screaming and sometimes come out to the car to get her trying to make the transition easier on me as she knew my heart was breaking even though I desperately needed just a couple hours break. They told me once I dropped her off and she had her moment she would be fine and happy. I would pick her up and she would be exhausted. After 4 months with no progress in making the transition any easier.... I decided that the hard mornings and the emotional stress it was causing both of us wasn't worth the 2 hours break and I pulled her from pre-school. The teacher asked me if I wanted a referral to OSNS (Child Youth Development Center) and never told me why. I declined although I would spend years coming back to this moment. I declined because I was not the only mom going through these very typical struggles with my daughter. "Me Too". Right?
When she was 4, Four hour melt downs started. When she would get violent and attack me and I would put her in her room and I would sit on the other side of the door and cry while she tore her room apart and screamed. She put her first hole in the wall. I sold toys she abused while she stood at the top of the stairs and waved goodbye to them like there was nothing wrong with this situation. She would wake up in the middle of the night screaming and not go back to bed for hours. Night terrors? "Me too". But I don't believe to this day she was ever having night terrors. Our downstairs tenant once asked me if I had ever taken her to see a doctor as she had never heard a kid have these types of melt downs before. I shrugged and wiped tears and told her lots of mom's tell me "Me too".
She was scared of bathrooms. Like in a terror kind of way. She would hold her bladder until her stomach hurt rather than use a bathroom that wasn't at our house. I spent a lot of time making schedules and reward charts. We used visuals. We scheduled everything. Every morning I prepared her for what lay ahead of us for the day and if I was going to make any changes to our plans she needed as much notice as humanly possible. You couldn't decide to go through drivethru somewhere on the way to the grocery store without risking a melt down. She had a very limited palate of foods she liked to eat although not as limited as some kids I had met. Every birthday party or event we attended consisted mostly of tears and stress and if you caught a glimpse of us it was usually sneaking out the back early both of us miserable and stressed. I learned about Sensory Processing Disorder and things began to make a little more sense. Noise. Touch. Yep. Our first missing puzzle piece. We made the connection to dyes and behavior with the help of a rash that used to appear around her mouth whenever it touched her skin and we eliminated all dyes immediately after researching and started down the long road of reading and learning to identify hidden ingredients in labels.
I got pregnant when she was 4. Her ability to follow house rules when it came to safety saved me during the first months while I was sick and tired. She would rub my back while I was puking and bring me crackers and ginger-ale because that's what she saw me do the last time. She really has a soft side to her that I really love and our bond is amazing. Her melt downs got more frequent and more longer in duration. I called Child Development bawling one day begging them to help me. They refused as she would be starting school in the fall and they don't help school age children. I did end up with a support worker that would visit weekly but other than being a great support and counselor for me nothing she ever suggested ever seemed to quite resonate with what was happening. She was amazing at helping me see past her behavior and onto the kid that I raised and loved and for that I will forever be in her favor as this was the year I felt like I was losing myself and my little girl and it was devastating.
When she was 4 I had my second baby. Another beautiful and perfect baby boy. Sophie-Lyn was in the room with me when I gave birth and I had spent a lot of time preparing her for the day. We covered every topic imaginable and the process helped both me and her prepare. Everyone was amazed at how well she handled the situation and how much she understood. She explained to the midwives that I was having a contraction when I couldn't talk (I laboured so well that sometimes they couldn't tell). After finding out I was at 8 cm she asked the midwife excitedly "Does that mean ACTIVE labor?" She was an absolute doll. She asked to hold the baby right away when he was out - but she did request I clean him off first. (LOL)
THIS was the most easygoing newborn in the whole world. He had hard nights. If we drove he slept. If I ran the vacuum he slept. If I wrapped him in a baby sling he slept. All the tips and tricks worked the second time round. Hmmm.
We got a new family doctor with the arrival of our new bundle. Sophie-Lyn had massive melt down at the office when we went in for the meet and greet. She was rested. She was fed. She was happy on the walk there. Then as soon as the doors closed behind us all hell broke loose. She didn't want to go in. She didn't want to go home. She didn't want to stay. She didn't want anything. Not Me. Not Anyone. These public outbursts are the ones I used to dread the most as she was STILL the loudest kid we knew and I hated having an audience while I would be fighting to hold myself and my patience together. At one point she flipped her manner and had a great conversation with the doctor while I was out of the room. The doctor told me later that her speech was fabulous and that I was dealing with a very intelligent little girl that was able to manipulate.
Kindergarten arrived. Transition issues. Daily. Over and Over. She did alright during the day but the drive to school was hard and there were lots of prying off of hands and at drop off and quite often the drive home also consisted of exhausted melt downs. She was scared of bathrooms. The teacher wasn't concerned. Sometimes she would shut down and not join in. The teacher thought she was fabulous.
One day after a close friends birthday ended badly on our part we left early and when we arrived home she was laying under the table sobbing and told me, "My entire body feels angry and I don't know why". I lay with her on the floor rubbing her back while my heart broke. This day started the first of many of a spiral of phone calls and emails trying to get SOMEONE to help. I learned that no one really recognized sensory processing as an actual disorder that needed help. I waited 8 months for a referral to a pediatrician. Because sensory tends to cause anxiety (and vice versa) I tried that route as well and waited hours at a walk in mental health clinic for kids only to be told their programs start for children ages 8 and up.
My mom begged me to try another natural path. I didn't want to waste any more money. She paid and drove us 40 minutes away to Kelowna. This natural path did something called Vega Testing. She told me she reacts violently to sugar, dyes, preservatives, and possibly gluten and dairy. I couldn't imagine possibly taking her off all those things with such a picky eater as what in the heck would be left for her to eat???! (Later I would learn that this diet is actually considered the Autism Diet and this was going to be a substantial point in our Journey.) I asked her about Sensory Processing Disorder. "That's high functioning Autism" she told me. "but she is so social" I said. "It presents differently in girls". She told me. I cried all the way home. It wasn't the thought of Autism that upset me. I had no idea how I was going to put her on this diet. Cutting out dyes was hard enough. I didn't have time or energy to create everything from scratch for her or the money to eat all organic. I was panicked and stressed. This was one situation where I was NOT hearing "Me Too".
But I did it. I sat her down. I told her I knew what was making her body angry. We talked about food and body health. We talked about how even though she wouldn't be able to eat any of the things we had we would find other alternatives to her favorite foods that would be just as good. I told her we were going to make her body feel happy. And she agreed to team up with me and make it happen. 4 days later I made a comment about something that I don't remember and she bust out laughing and continued to bug me about it. This was the first time I remember her laughing and making a joke in YEARS.
It was a turning point for me. I researched autism. I researched high functioning autism in girls. Pieces slowly were falling into place. I reached out to other mothers that were saying "Me Too". Only for the first time in my child's life, I actually felt like they really did understand.
As soon as I saw the pediatrician I pushed for the referral for Autism. (I finally got into see him right before her 6th birthday). She had begun having melt downs at school and spent portions of the day hiding in the boot room and being unconscionable. He wasn't keen on giving the referral to me. He suggested the books "A spirited child" and "the Sensational child" but said for Autism she simply didn't present. I told him I wanted it anyway. I ended up starting the long process and getting an appointment for 18 months in the future. I began to hire specialists for what we could afford out of pocket. The first specialist i talked to on the phone that had experience with autism changed my world. She could explain mysteries about my kid to me before she had even met her. A puzzle piece LOCKED dead into place. I finally felt like I was on the right track with this kid.
Febrary 26th, 2019, when Sophie-Lyn was 7 years old at 2:19 pm we got the diagnosis of AUTISM. I felt an overwhelming sense of relief and instantly let go years of pent up guilt.
I hugged the psychiatrist on my way out the door and thanked her for changing our lives!
And so....... It started.
Our Journey into our new normal and our new lives!
And one thing is for certain.
I will NEVER allow someone to tell me "Me Too" when I am searching for something lurking in my maternal instincts. I learned to trust my instincts. I learned that I wasn't a failure. That I haven't done anything wrong. Actually.... I had been doing something right all along.
I'm a Mother of a child with Autism.
Me. Too.
And our lives are just finally getting started.
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