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 .
As a mom of four I am proud of many things, more trivial things than triumphs
The big accomplishments are great don’t get me wrong but many of these things while exciting at the time fade quickly into the background.
Pride is an interesting emotion. I think in those you love you find pride in the inner beauty and the way their spirit shines through.
I am the most proud of my children. I know their lives haven’t been the easiest. Each of their roles are different.
Growing up in a busy household filled with love and laughter , but with the unpredictable chaos that autism can bring in an instant was not easy. It was Ever changing and they were constantly going through the ups and downs that this life can bring. I know that living this life beside their sister made them stronger and more empathetic people. It doesn’t however come without its struggles, challenges, and trauma.
There was Lots of adversity to overcome at different times. Yet they never hold it against her or resent her for it. They love her always no matter what.. To see them advocate for her and make sure she is included. That makes me proud.
To know that they are loving caring individuals learning to navigate through their lives but never leaving her behind.
To see my daughter get up on a long day after school, swim and dance and get up and make sure Alyssa is fed. To see her come in with a cake pop just to make her sister happy makes me proud.
They are far from perfect and drive me completely bonkers but they are perfect for me.
As parents we are constantly second guessing. I am filled with so much guilt, always feeling like I couldn’t give everyone what they needed, What they deserved, and what I wanted to give them.
This life of parenting a child with a disability pulls you in so many different directions. It is damn near impossible to get it right on all ends. When I look at my kids I see well adjusted happy humans. I know we did something right and I am damn proud of that.
When I look at my husband and how he interacts with our children, and although patience isn’t always a virtue they all look up to him. He makes them all feel safe, secured and loved. I couldn’t be more proud of the father he is.
My Alyssa, my sweet girl, the one who was dealt the tough hand. The one who had to take the road less traveled. The one who has the odds stacked against her.
This girl works so hard everyday to exist in a world that is not easy for her. It is overwhelming and confusing,and hard for her to understand. It places demands that don’t make sense to her.
She has to work for every single word, every single sound she makes. You can see how much effort it takes her. It simultaneously makes my heart ache and burst with pride.
When she hugs me and squeezes me and I feel the love she can’t always express I fill up with pride. That is a barrier that was only recently broken.
This girl wakes up with a smile everyday. She lights up my life with her pure joy. Her laughter fills my heart like nothing else.
I am the most proud of her. Even though there are aspects of her life that are difficult, she perseveres.
She is happy, loving and the sweetest soul you will ever meet.
It’s the simple things in life that I take pride in and mean the most to me.
I am proud to Announce The Table For five podcast that me and four other Autism mamas host,have found someone who shares our mission to partner with us.
Lindsay Rosenthal is a behavioral analyst who works with children on the autism spectrum as well as other developmental disabilities. She saw the difficulties the caregivers moms specifically have providing care to their children and lack of support and understanding that there is. We at the table of five know first hand now emotionally exhausting and isolating that can be.
Lindsay had a vision to find a way to give support to lessen the isolation and to make moms feel “pampered”.
Moms in a general and especially moms of children with high needs take care of everyone and put themselves last. The grueling therapy schedules and consuming care that our children require make it card fit in self care.
She started a subscription box called The Pampered Parent,designed for moms of children with special needs
A “featured item” that’s from a company that is run by and/or employs individuals with special needs
Self-care products like motivational books and interactive journals, positive affirmation items, relaxing bath and beauty products, and delicious edible treats
An exclusive item (t-shirt, tote, mug, or tumbler) with a special saying or quote
Each month, our box has a different motivational theme that is carefully thought out and tied together.
A part of the subscription contains access to an online community filled with people who understand.
The best part is that she employs special needs adults as part of her box. The adult disabled community is often forgotten. To find someone who recognizes that and empowered to find a way to Spotlight that community is beyond amazing.
My ultimate goal is to provide employment opportunities to individuals with special needs.”
– Lindsay, Founder/Owner
You can sign up for one box,or a monthly subscription. You can also gift a box to someone in your life that is in need of support.
Day 6: Post a photo of a time you were at your lowest as a mama and no one knew
There have been a lot of ups and downs during this autism life it. The highs are so high and the lows are so low. This causes a lot emotional turmoil with in.
There having been some really hard times throughout Alyssa’s life.
The grief period after diagnosis is devastating.
The realization that this is the rest of her life.
The seeing all the other kids develop and realizing how behind she is, and where she should be and although that’s not her path it doesn’t make it any easier on my heart.
Watching her struggle with anxiety
The self Injury
These times have always been really hard for me.
But I do whatever I can to get through. My love for my daughter, the hope I carry in my heart always pushes me forward. Her smile, her laughter is what I draw my strength from.
Maintaining a marriage, and mothering other children along with all the other Bombs life throws at you on top of this can be defeating and leave you mentally and physically exhausted.
My lowest point as a mom was when Alyssa was 12 years old. My other kids were 14, 6 and 4
Alyssa was doing through a phase of aggression that seemed to come out of nowhere. She had been aggressive in the past but not in a long time, with the exception of minor incidents here and there.
The difference now though was her size. I could no longer scoop her up the way I could when she was younger.
Along with the aggression was terrible meltdowns, screaming and not coping well with things.
This time her aggression turned towards her sisters.
Every single day she was hurting them.
Everytime I turned around she was pushing, hitting and pulling them down.
The problem was she was so much bigger than them. She was 12 and my youngest was 4 that is a huge size difference. She can easily hurt them even just pushing them.
When she would lash out it would be so quick and so fierce you didn’t even see it coming.
She would grab Kierra’s arm and fling her like a rag doll.
It was a very trying time
It was becoming unsafe in my home for my daughters and I didn’t know what to do
I didn’t want to tell anyone because I was afraid to. I knew people wouldn’t understand. How could they we didn’t?
I know she didn’t understand what she was doing
I didn’t want to have her looked at in a bad light
I needed to protect her too.
One day she was trying to hurt her sisters and they were instructed to go in my room and lock the door behind them … 4 and 6 years old
This was becoming common practice
She was so fixated on trying to get them she tried to kick through the door. The door actual splintered.
I somehow got her into her room and pushed her in and shut the door.
I sat on the floor with tears pouring down my face as I held her door knob to keep her from leaving her room, listening to her scream and flop, while her sisters cried behind a locked door down the hall.
I didn’t know what to do anymore
I couldn’t keep doing this.
I’m the corner of my mind I thought, she might need to go somewhere. The thought of that brought my tears even faster and took my breath away.
I wanted to call my husband but I couldn’t even let go of the door knob because she kept trying to pull it from the other side.
That thought riddled me with guilt. I had gone through a lot and my heart has taken so much. But to be away from her I don’t think my heart could take that.
I vowed to love and protect her no matter what. But my young daughters needed protection too. All it would take is a push at the wrong place and they could be seriously hurt.
Something had be done
I reached out to her school. Her speech therapist made social stories and did home visits to help.
A caseworker from An agency that helps with disabilities came out to evaluate, they usually only take the more severe cases under 18 and it’s difficult to get a slot. They were there 30 minutes and said you need help, and have her a slot. They worked with the school system to get a behaviorist in the home.
Things didn’t turn around right away it took time.
This period lasted almost 9 months all together but with help we got through it.
My daughter beats to her own drum that’s for sure.
The simplest things in life make her happy, and the most random things upset her.
At first look it may seem she is different from others .
Of course she struggles with change, anxiety and she can be very controlling especially with her environment and belongings. She struggles to communicate and to understand. She gets very upset when she is confused and if she is frustrated.
When you look past all that she is just a girl. No different from me or you really.
She loves to laugh and she loves to make you laugh. Her eyes twinkle when she is happy and it is the most beautiful sight.
She wants to be included, to interact with other but sometimes she doesn’t know how.
She is super proud of her successes but very annoyed when things are hard and she doesn’t get them right.
She likes to be hugged for comfort, loves affection but it has to be on her terms
She has her people and it is a small circle but she loves them with her whole heart, I don’t need words to tell me that.
Her best friend is a stuffed tiger and he brings her so much joy. She uses him for a buffer between her world and ours, but she also uses him as bridge. She acts things out with him, tries to communicate with him. I suppose that IS unique.
There are so many things in her world that may look unique to you, but to me they are “normal”
She doesn’t know her letters but can spell words
She can hear everything even the quietest whisper
Her senses are sharp and she doesn’t miss much
To me she is more than unique, she is extraordinary
She has overcome so much and fights every single day to live in our world, to communicate, to break down barriers
She is beautiful, and sweet but fierce and I wouldn’t have any other way.
Join us and post your own pictures as we sprinkle Autism all over social media.
I started writing this on Christmas Eve and never finished it . It is more vulnerable and raw then what I normally post but it’s important to talk about it
At times I feel disconnected
Disconnected from family
Disconnected from my husband , my own children
I love them of course but sometimes it feels if life is just moving around you it you are staying still
It’s Christmas Eve and I want to feel happy but I don’t
My tree is finally up and decorated but I don’t feel the joy I usually feel
I feel tired, just mentally exhausted
The days go by so fast , and I feel myself wanting to grab a hold and enjoy one , but I can’t
I have times where it lifts and I come out and play for a short time , but then I retreat back
You can’t see it , you can’t hear it , you wouldn’t know it if you were around me
I feel guilty for these feelings as I have so much to be grateful for
When everyone is cheerful and happy and everywhere you look , there are picture perfect families.
When you can’t shake the feeling no matter how hard you try
Depression is real and it’s dark
It’s not about being sad or crying into your pillow
It is about not being able to feel
Feeling like you are under a dark cloud that you can’t get out from
It’s going through the motions
Life is tough sometimes
Marriage , kids ,,teenagers , autism, finances , work , balancing it all , a pandemic is just the cherry on top . It can all be very overwhelming
And this on top of it makes you feel like you suffocating
To cry would be a relief because you would feel
It’s no ones fault , it just is
You can’t just “cheer up “ or “snap out of it “ thank you for the suggestion though
I live with anxiety ,not just any anxiety
Generalized anxiety , panic disorder , and ptsd and it is horrible at times but I silent pray for it because at least I can feel
You have to to find a way to put one foot in front of the other , to just put your head up
It’s okay to feel this way , but don’t let the tears silently fall by yourself
Let someone or something help
Pick up the phone and talk to someone
Say it out loud
Even though you just want to isolate
Depression does not make you weak , it takes so much strength to fight it
To go through the motions
To push through and even the times you can’t
And sometimes you need help
It might be in the form of medication , or a therapist , it could be a loved one or a friend ,
But talk about it , talk to someone do not carry it alone
Even though it’s so hard to reach out
It will help
It’s okay to not be okay
As a special needs mom there is a huge responsibility on you to be ok , to be strong , to fight , to live forever
But sometimes you have to take care of you; as hard as that is , you have to take a breath and help yourself
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
We running errands and she was getting crabby in the car
It’s hard she is used to going places not just staying in the car .
I really don’t want to bring her too many places plus there is no way she would wear a mask . I’d bet on it
NO WAY !
She was getting out of sorts so my husband is going to run in the gas station to see if she has to go the bathroom even though she said no
I’m like damn she won’t wear a mask . I said tell them she has a medical exemption if they say anything . I’ll come in if they say anything . I just left from seeing my mom through a window and I’m not in the mood for ignorance .
He grabs the mask and says it I’ll just see . She whines a little but puts it on . Ok but she won’t leave it on . My husband is pointing to his . She freaking wore it the whole time . I am so shocked ! Then she went in stop and shop and wore it . I can’t believe it !!
You have to try . Next time might be a No who knows ? I am literally so surprised .
I’d like to say Alyssa has always been Daddy’s little girl , but that wasn’t always the case .
It is the most horrible feeling to see your child in pain and not be able to help her . It makes you feel absolutely helpless . It was even worse for her Dad , as a father you want to be able to protect your daughter.
There was a time at the peak of her sensory issues that Alyssa would scream for hours . It was heart wrenching to watch .Only me or her Nana could go near her. If her father tried to go near her she would escalate and scream louder . Her own father could not touch her . There was nothing we could do to help her . Eventually she would calm down and go back to herself, these screaming episodes would last 2-3 hours .
This was her hardest phase and believe there have been a lot of them . We didn’t know what to do for her or why this was happening . We didn’t even know she had autism , or what that meant , for our family or our little girl .
Today she feels safest with her Daddy which how it supposed to be ! They have an amazing bond .
Autism adventures with Alyssa 