Our family's journey with autism. An honest view into living with severe autism, the heartache ,the joy and everything in between. Join us on this adventure of autism, love, and chaos .
We were preparing for a new baby. We had no idea what that meant for Alyssa. I tried to explain and we had no idea what or if she understood.
We knew we had to find away to keep the baby safe. Alyssa had a lot less agressions but the tendencies were still there. She could also flop, kick or scream in a moments notice and could Inadvertently hurt a baby.
Would she be jealous? Annoyed by the cries? Try to hurt the baby? It was so nerve wracking. Alyssa was six when her sister was born. She had calmed considerably, but still needed to be supervised at all times. It was almost if she were still in that toddler stage.
We set up a playpen and put the bouncy chair in it, so there would be no accidental mishaps. Alyssa examined every baby item that came into the house,from binkies to baby chairs. We just allowed it. Whatever would make her more comfortable,and adjust to the baby.
She was queen of the house for a long time and I didn’t think she was ready to share that role anytime soon.
Kierra was born and came tumbling into this world. A beautiful, perfect baby. We were over the moon on love and we would find a way to make it work.
When Kierra was a new born I got up one Saturday morning and Alyssa was up before me which is rare. She covered the kitchen in flour. It was everywhere. Another time she snuck into the Basement got into a can of paint stepped in it and make bright blue foot prints every where. It was all over the tile floor and there are still very faint smears of blue there.
I couldn’t believe she did that. Was this her acting out? So hard to say. I later realized this was on an episode of teletubbies.
Alyssa completely ignored her sister. She would give her a side glance here and there but barely acknowledged her. We didn’t push it. We would let her do it on her own time. She would watch me change her and feed her but then she would go about her business. It was almost as if she was allowing it but not participating.
She still wasn’t talking,but she was becoming easier to handle. Her behaviors were still there but not as intense or frequent. We were hoping the baby didn’t send her into a regression and so far it hasn’t. She was adjusting well.
She was still sensory driven and fast. She still loved the tub and she was sneaky. No fear or understanding of danger. She was continuing to make progress, and that it was mattered.
Alyssa began to settle down a bit at four. She was still very much a sensory seeker and needed to be physical or in water to stay regulated.
It was easier to achieve that in the warmer months. She was generally happier and calmer in the summer a pattern that I had yet to realize. She still struggled a lot but the intensity had simmered down a bit.
She still had no language but her aggression has simmered down. She was thriving in school. She was having some success with pecs mostly at school.
She had learned to point to her eyes to say ( I ) we would say Love and touch our heart and she would point to to us for you! We would do it everyday She also learned to blow kisses.
School was starting and I was sure it would be a disaster. She had made some improvements but let’s just say she gave strong willed a whole new meaning.
Meltdowns, self injury and she could make the tiniest pinch hurt like you wouldn’t believe.
She transitioned well into school and they were amazing with her. We started the signs and the pecs program but she was resistant at both. She would only do it for a highly preferred item.
She loved water and being outside, she has the sweetest laugh when you tickled her. She was lovable when she wanted to be.
She began potty training in school and was pee trained a few months later.
She still wasn’t talking. I was still holding out hope that she would catch up by kindergarten. I added speech and OT Outside of school and we had plenty of supports but language was still not happening and understanding was still inconsistent.
Her sensory issues were a big struggle for her.
She seemed to enjoy school and her teacher was a god send and they adored her.
She still screamed a lot and would run off and second she got. She was very challenging but she was also funny. She had big curls and bright green eyes, and the cutest smile ever.
She was making progress and half way potty trained so although things were really hard, there were improving.
It was tough balancing a six year old and A three year old who was needed a lot of attention and supervision. They loved each other so much and I loved watching their relationship when she would tolerate it.
Her first year started our typical. She reached all of her milestones, was walking and starting to say words.
Things were good. I had a three year old bursting with energy and endless questions, a curious one year old toddling around the house, and we getting ready to purchase our first home. It was an exciting time.
As the year went on we noticed differences. Alyssa didn’t appear to be able to hear. She didn’t respond to her name or any sound at all. Well except Barney if you turned on the TV she would come running.
At first it seemed like she was ignoring us, involved in what she was playing with, typical toddler but as time went on it happened more and more until she was barely responding at all.
We immediately scheduled hearing tests, they needed to do two to figure out if she could hear or not. We thought she must be deaf. Her emerging language stalled as if someone hit the pause button. Which made sense if she weren’t able to hear, but she could.
She also began to resist getting dressed and didn’t want clothes on. She stopped napping. She was spinning in circles and spinning toys, wheels anything she played with. I wasn’t sure if she was understanding what we were saying to her.
There was no Google, no autism screenings or general knowledge of autism to even have that as a concern. Her doctor wanted to wait until she was 2 to refer to early intervention.
We were concerned about her language not developing.
She had constant ear infections.
She was mostly her happy little self. She loved the bathtub more than anything else, except maybe her brother she adored him. She constantly liked to be bounced and tickled her giggles echoing through the house. She also liked to be naked and barefoot. She was strong willed.
She was a beautiful little girl. To look at her you would think nothing was amiss. I was getting more worried and I had a feeling deep in my gut that something wasn’t right. I loved her so much and I just wanted her to be okay. I tried to push it away. Toddlers are busy,they are silly, she is fine.
We will just get her speech therapy and they will get her talking.
This picture was taken on Christmas Eve. She was 20 months old. It was our first Christmas in our new home. We had lots of family over. She cried almost the whole time. At the time I thought she was cranky.
Looking back I know she was over stimulated. I can tell by the way her arm is over her head. She trying to block imput from coming in. I would learn that later in this journey I had her in a dress with tights, shoes and a pony tail in her hair. It probably made her so disregulated. Another word I didn’t know at the time.
This is why autism awareness is critical. We have come so far since then but there is still work to be done. We need share our stories, show all sides of autism. We need to educate,advocate,and stand strong.
Autism awareness month day 1
Alyssa age 1
Share a picture of your child prior to diagnosis on the comments 💕
As I sit here and watch you try to answer questions, I can see how hard you are trying. It makes my heart ache seeing how hard it is for you, a task that should take such minimal effort. At the same time, to hear you answer with such pride and confidence when you are understood and correct it fills my heart up and I can’t help but to smile.
I am filling out a questionnaire an endless one it seems,all about what you can and can’t do. I have grown pretty thick skin over the years, but there is something about these questions that really irritate me. I find myself writing notes on the side.
See they can’t capture the real picture of you.
They can’t see your heart, your smile, the way you brighten everything around you
I am fiercely protective of you even on paper. Never is not an answer I associate with you. Never seems so negative, so final. So I will continue to write notes to explain, even though it is strictly multiple choice.
Never was used a lot in the beginning of our journey
I was told that you probably never Use a fork, or the toilet. That you would never understand words or speak them just to name a few.
Don’t worry, mama never believed them
I always believed in you and I always will. I will never stop fighting for you, pushing you, or teaching you.
Things look different than I thought they would and it’s okay, because baby you are not less, you are so much more.
More Love, more smiles and more laughter than I could ever imagine. You could even say you are a little extra.
I say extraordinary
You amaze me every single day. You never give up. You are learning and growing in so many different ways and I will be right here beside you to support and help you in every way I can.
I don’t know where normal worry begins or ends because the anxiety takes of over like an uncontrollable monster that steals every ounce of rational thought
All parents worry and parents with special needs children, or medically complex children even more so
Our children are so vulnerable and that makes us vulnerable too
I worry about what will happen to my daughter if I die . If anyone will love her , understand her , and connect with her the way I do
I know she will be cared for and I know she will be loved but she needs so much more
I worry about her being sick , or hurt as she is unable to communicate this with us . When she is sick I have to fight the panic that can consume me
I worry about someone mistreating her or worse How will I know ?
The worry can eat away at you
I wonder why this happened to her and what she would be like if she wasn’t affected by this
Would she be as happy , as sweet and lovable ? Would she bring light and joy to everyone the way she does now .
I wonder why I was blessed with this beautiful soul to take care of . This sweet and sassy , smart and silly girl , who is full of innocence and love .
I wonder what kind of person I would without her
I wonder what she thinks , how she feels . What it’s like to be her . Is she truly happy ?
I wonder if she knows how much I love her , deep in my soul , a connection like no other
I wonder if she knows how proud I am for every single accomplishment she has , no matter how small because I know how much work it is for her and how hard she had to dig for them. That my heart could burst with every new word that I thought I would never hear , every hug or kiss that I didn’t think I would ever receive.
I wonder if she knows I would take all her struggles , confusion and pain as my own and carry them for her if I could
I wonder what she will surprise me with next because she never ceases to amaze me
The worry as a special needs mom , a mom in general and for me as a person will never stop . I have learned however to find happiness and peace in the here and now . To find the humor in every situation and to appreciate the beauty this life has bought me
I am sitting here with old home videos playing in the background, Christmas 1996 to be exact . It was Alyssa’s first Christmas. We had no idea the journey our life was going to become, no idea the twist that would be starting a year later.
My baby girl was having her first Christmas , sitting with a bow on her head with no signs of anything amiss, while my three year son was tearing through presents like a tornado.
Alyssa December 96
We were at my parents house living with them while saving for our own house, which we purchased just 7 months later. It was our little family with my parents, and my sister .
Life seemed so much simpler then . I’m not saying it was perfect, it wasn’t .
It was full of hope. Full of love and laughter and dreams for our family . Goals and determination for a good life . Young and in love and on track to purchase our first home. Relishing in the excitement of our son and the assumption our daughter would be doing the same before we knew it. Why would we think any different as she sat on the couch, cute as a button with my dad , playing with wrapping paper and taking everything in as 8 month olds do.
It was free from the pain I have experienced since.
They pain of hearing the word autism
The pain of learning my daughter may never talk or walk the typical path
The fear of realizing our move to the suburbs away from the city in search for better life for our children, would also bring us away from friends and family and leave me isolated with two young children and no help.
A young mom 22 years old, alone with a very challenging child and a typical preschooler, trying to make sense of having a child with autism and all the difficulties that come along with it , and a young Dad with the weight of the world on him as he tried to work two three and sometimes four jobs , to support what we realized was not going to be a two person income. It was not in the cards at the time.
We did the best we could and our family supported us and loved our little girl the same if not more, and that has been one of life’s biggest blessings.
It was still a very painful thing to process and accept . At a time when there was no autism awareness at all. All the physical and mental demands this life brings and the emotional toll it takes is sometimes overwhelming.
To try to be hopeful and just move forward the best you can is all you can do. At this time I had no idea my child would be disabled for the rest of her life. I had hope as she was stubborn and tenacious, ridiculously beautiful and so bright, and if anyone could overcome this it was her . If any parents love and determination , if their devotion or their willingness to do anything for their child , could change the course of this path then surely it was us.
It would happen it just had too .
Three years later a devastating cancer diagnosis came . Another completely unexpected hand was dealt . My mother in law, Alyssa’s Nana was diagnosed with pancreas cancer. She was Alyssa’s person , she adored her and they had such a strong connection. She was there during the hardest of times. She completely doted on all her grandchildren but Alyssa was special to her . To think about life without her was completely unimaginable . She was the glue that held the family together .
They gave her 6 months to live and she was only 48 years old. It made an autism diagnosis pale in comparison.
She was taken way too soon. It was devastating, and as hard as autism is this showed me there are harder things in life . Other unexpected things that can change everything.
There are times in life where things are really hard , things hurt and feel like they can swallow you whole . An autism diagnosis can do this , losing a parent can do this, a pandemic can do this , there are many things in life that can and will do this .
This year has some really difficult things . A scary unknown virus, a pandemic, a shutdown. These things seemed as foreign and unknown as Autism pre diagnosis.
Loss of services, regressions, loss of sleep, the anxiety of the unknown , sickness and death for so many. The uncertainty of it all, wearing masks , the behaviors coming back and Learning a new normal , it all felt like a movie, or an alternate reality ; how could this be real life?
At the same time there came some good . Family bonding and togetherness , life slowed down . We learned to appreciate the little things . We spent time together . Alyssa, although regressing behaviorally , was progressing in other ways .
There were so many more opportunities for learning , modeling and interacting .
It made us take a second , an extra minute and find ourselves again .
We have to learn to take the good with the bad , to find the joy , and push the anxiety aside . To appreciate the little things . In some ways it’s a lot like an autism diagnosis , we have to find a way to adapt , to find joy and hope through the uncertainty , to find a new normal and forge ahead the best we can .
In not only 2O20 , but in life in general it’s about learning to live in the moment, to love and laugh and cherish these times of contentment , to work through difficult times without losing hope and losing ourselves .
Instead of achieving happiness we learn to soak up the good times , live with gratitude and give ourselves grace . Find the light or at least move toward it .
For a long time I hated autism , I resented it , I blamed it for stealing my baby girl’s life , and although a part of me will always grieve that life for her , I can see past it. I can appreciate the things autism has given me .
It has given me a beautiful girl , who will always be my girl . Who will always be sweet and innocent . Who knows nothing of darkness and although is forever child-like , radiates joy . Her smile lights my heart always.
Just like autism this pandemic has brought me unforeseen gifts . Through the zooms and the unexpected gift of time , I have made connections and friendships I Never thought I would have . Amazing moms who live the same life as me . Who understand and appreciate all the struggles and joy this life brings .
Alyssa inspires others, something I never thought possible . They look at her and see light and hope . There are no words that can describe how much that means to me . They see how amazing and special she is , just as I do .
So I welcome 2021 but as challenging 2020 was it bought me blessings too. It taught me things that I want to bring into the new year and not forget.
You never know what is waiting around the corner positive or negative . Taking life as it comes and to not always search for the next best thing, or something better, but finding solace in what’s right in front of you.
Each year brings hope for a better year but I think every year has its difficulties some are more difficult than others but it’s learning to slow down enough to appreciate the happiness and peace in between the tougher times that makes a difference, so here’s to love life and laughter in 2021.
He doesn’t think the the things I think are important matter .
At all
And frankly it irritates me
Can’t he pretend to go along
He will humor me but still , not happily
This was going to be the year of matching Christmas pajamas , grinch ones specifically
I am on my phone trying to find them very unsuccessfully.
He thinks it silly it doesn’t matter
We still don’t have a tree he could care less
We are finishing up our breakfast and he signals the waitress to come to our table . I look up and he gives her a 2O dollar bill and says I want to pay for the guys breakfast over there .
I look around perplexed and see and elderly gentleman with a cowboy hat on siting alone eating . He goes to tell the waitress don’t tell him who paid .
We get up and walk out and I check out this guy as I walk by looking for a clue or some kind of recognition . I smile through my mask and mumble a platitude as we pass by .
We get in the car and I say that’s was nice and he says , I overheard him talking to the waitress and he was talking about how he lost his home and his business this year . So he paid for his breakfast , no big deal.
While I was busy worrying about matching pajamas oblivious to anything else
And why ; my daughter with special needs will not wear them
I want the picture perfect Christmas things , even though I’ll never have them
We are busy and messy and Stressed
Our house is loud and chaotic
We are literally the gridwalds
My daughter will fight me on decorations because she doesn’t like change
We can’t have the picture perfect things
Our life just isn’t set up for it
And it’s hard to give that up
It’s hurts
I want some kind of normalcy
Christmas day 7 months prior to diagnosis . She always went off alone away from everyone . We started Early intervention 2 months later
Yes things have progressed over the years
I know in my heart that is what matters
But the progress is so painstakingly slow
Christmas Day 5 months after autism diagnosis. There is no pictures of her opening presents Or sitting near the tree .
My husband did this gesture out of the kindness of his heart
Not for credit . Not for a picture or a Facebook post
This is the true meaning of Christmas: it’s all the love you’re surrounded with , it’s the blessing your life brings you . It’s not trying to have what other families have , or trying to get that perfect looking picture to post
My daughter is 24 years Autisic,and non verbal
She has willing watched Christmas movies with us for the first time . She rode the polar express train and was so happy to see Santa . She is aware he is bringing her a present . She has picked presents for herself off of Amazon.
This is our Christmas miracle
Alyssa on the Polar express after receiving bells from Santa
Today my husband opened my eyes to what matters . Matching pajamas don’t matter
Watching my daughter sit on your lap as you sit at the table seems like the most natural thing in the world .
Except sometimes it’s not
A nana sitting with her grand baby is something you can take for granted .
Sometimes you have to fight for it . Like when that child has autism , and doesn’t like to be touched , hugged or snuggled , or when she does but it’s on her time and her own terms.
You fought for her . You took to the time to wait until she was ready . You loved her so much!
You learned and you were patient
You always believed in her and didn’t care what any of the experts said
You sat with me at night and told me that everything would be okay, that she was so smart and she would talk , you just knew it in your heart. I needed to hear it whether it was true or not
There was a time that she only allowed me, you and her brother to touch her . She wouldn’t let anyone else in . You were the only other adult besides me that could reach her , that could comfort her .
You were the one who got her to eat macaroni and cheese when for months the only food she ate was nutrigrain bars and cheese doodles.
You sat here with me when she started therapy and would scream through her sessions , us both keeping the other one from stopping the much needed help ,
You were relentless with your love and your bond with her was amazing and so special .
We didn’t think she would ever use a fork or drink out of a cup , you were the one who got her to take a sip the first time it was Pepsi out of your cup while she was sitting on your lap .
We couldn’t believe it and laughed because of course she would drink Pepsi out of a cup !
You never treated her any different and loved her for who she was. You always acknowledged her and made damn sure everyone else did too.
Some might say that you were just being a grandmother, but it went far and above that.
You were there when she needed you, when I needed you and your son needed you.
You made sure that her brother also had plenty of love and attention, and gave him lots of extra nana time and treats too of course. You saw how hard it was for all of us.
You made sure she was included whether she was aware or not . You never discounted her feelings or her potential.
Your bond with her was so strong , and it made me so happy . To see someone love your little girl the way you do , is an amazing feeling. It helped me so much during this time .
I was a 23 year old mom with two kids trying to make sense of her child being diagnosed with autism , during a time there was no awareness and no understanding .
You made me stronger , I felt supported and was able to fight for her and to be her voice
A time when others thought she was spoiled and had no idea the difficulties we were face with
And then you got sick
You were 48 years old and they diagnosed you with pancreas cancer and gave you 6 months to live . We were devastated .
We were again faced with an unjust diagnosis . This one even worse than the last. It seemed so unfair – a person who is so selfless and loves so much .
Alyssa was now 5 years old and had made so many gains but still had lots of challenges .You were a mom to four and a nana to 5 grandchildren , that you adored and who equally adored you .
You accepted everyone. You loved your grand babies with everything you had. You were getting robbed and they were too . You fought with everything you had and battled for almost two years .
You got to see me marry your son , and you were glowing , looking more radiant than the bride. I didn’t mind though , I never saw you look more beautiful and happy .
You also got to witness another grandchild be born and that made you over the moon.
I am so blessed to have known you and have been loved by you . My children were doubly blessed , you spoiled them and loved unconditionally.
You helped me though what was the hardest time of my life and to say thank you seems so small.
I wouldn’t have been able to do it without you. The love and understanding you gave our family meant everything. You never gave yourself enough credit , your impact on us was tremendous.
You are more missed then you could ever know.
Our lives will forever have a void .
You always said our girl will talk and although she is still nonverbal she has words. I can hear your voice saying I told you , I knew she would .
Can you hear her from where you are ?
Can you see her and all the progress she has made ..
I choose to believe you can , that you are looking down on her and smiling and whispering, I just knew it .
I am so incredibly grateful to have known you. For all the love you gave , the kindness and grace you showed and the best meals I have ever had . You took care of us in many ways.
Family support is everything . We Have been incredibly blessed with it , It makes such a difference and lightens the load we carry so much.
I hope you know what a special person you were and how much you were loved.
Dedicated to Louise McIsaac , Nana and mother extraordinaire .
It has been a trying couple of weeks. Lots of behaviors have resurfaced , flipping , dropping , screaming and some aggression . While things can still be challenging at times, we have learned to navigate pretty well.
We definitely still have episodes from time to time , bad mornings and bad days. If she gets triggered and her anxiety spikes it can be difficult.
We have not had a couple of hard weeks in a row for long time . I honestly can’t even remember when.
I have been talking about Christmas and she wants no part of it . If I mention the tree or presents , she says no thank you , and makes it clear she doesn’t want to hear about it .
It’s a fine line as I want to prepare for what’s coming but sometimes it causes a lot of anxiety for her .
It is so hard when she doesn’t really have an interest in anything , but she likes opening presents.
The past two years she has had much more of an understanding with more awareness during the Christmas season . Last year she was able to pick stuff for her list on amazon and the year before that circled stuff in the Walmart catalog , which was the first time ever.
Which I thought was great . It is so funny to see what she picks .
Ther other day I got her to picked stuff off amazon , she knows exactly what she likes and what she doesn’t . She will scroll right by certain stuff and stop and point at others.
She gets it and that simple thing means so much because for 20 years she couldn’t show us , and didn’t seem to have any awareness of it .
I couldn’t figure out why she was getting upset when I mentioned it . She usually gets happy about it .
I was wondering if she had lost it . If she was Just not interested in it anymore. I was honestly getting a little sad about . We only have only had this for 2 years . It would cruel to take away so soon .
And yes I know I am making this about me . I love Christmas and I want to share that joy with her . I love that she gets it and we can “talk “ about it .
Autism has already stolen too many things , and I didn’t want to give up this . It is already hard to get her through the changes as it is .
Tonight when I brought it up she smiled and nodded yes . I talked about decorating the tree and watching a Christmas movie .
She doesn’t really watch movies but last year we got her too watch a couple Christmas ones and she watched the Dora movie too .
It is hard for her to follow along so I try to keep her engaged as much as I can . Well she went over and sat on the couch and I think she thought I meant now . I said you want to watch a movie and she pointed to the TV and signed yes.
We put on the Grinch , the cartoon version and I didn’t realize there was a new one , let alone it was an hour and half as apposed to 30 minutes .
She did great !! She laughed and smiled it warmed my heart . I was pointed out things and asking her what things were and she was repeating and identifying them .
Engaging in a movie is so rare !
She started saying something over and over and I was trying to listen to figure it out . She was saying Cindy loo hoo , over and over to herself . It was so cute. She was repeating tons of words from the movie and she was so happy !!
She says cheese when she saw the camera ! And is saying Cindy loo hoo while watching the movie ❤️
I am so grateful she is back to herself . I am so grateful she was able to experience this . These are the things that before autism was in Our life were assumed .
I assumed my kids would snuggle on the couch and watch Christmas movies , I assumed they would sit at the table and make Christmas lists , I assumed they would know who Santa is
There is so many things we assume we will have and that is not always the case . Many people never get to have these , or in her case have to wait 2O years to experience them .
It makes it so much sweeter when it happens .
I appreciate this moment , this experience . Even though it is such a simple thing it brought me so much happiness
It is a gift .
We have to keep trying and hoping . It’s never too late . We have to find the joy and celebrate the holidays in our own way .
Autism adventures with Alyssa 