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 .
You can lose your ability to cope and even to care
It is can push you to the point that you can barely get out of bed , or shower. It can literally paralyze you. Except when your a mom, especially a mom to a child with special needs you don’t have that luxury. You have to get up and at least do the bare minimum to keep everyone safe and cared for.
It takes all your mental energy. At times you don’t even know why you feel this way. You become numb and everything feels so heavy. You walk through the motions of your day with no feeling. Sometimes you don’t even realize what an unhealthy place you are in. You will Silently beg for something to make it stop. It is hell On Earth
Things feel so big . You feel so weak so tired, mentally tired, and you feel so powerless to fight it, to make it stop. You feel like you are losing control and you begin lose interest in the things you love, that being you joy.
Everyone’s bottom feels different. There comes a point where you can’t do it alone , you need help to pull you out of the darkness.
Asking for help can be so hard, it can feel so defeating.
We have this unrealistic pressure on us to be strong, to keep up. Asking for help doesn’t make you weak it actually takes incredible strength.
It is difficult to put your vulnerabilities out there, to risk rejection, judgement , and feelings of inadequacy. It takes a lot to have the courage to put aside your self doubt and seek help.
Make the phone call, say it out loud and give yourself grace. Always remember how important you are . You matter
We all need a little help sometimes and that’s okay. We all need love and to allow ourselves to heal. Admitting that and letting out guard down is what takes the most strength.
Young love , there’s nothing like it . You live in this bubble of hope. You make plans for the future and wonder about what your life together will bring.
You dream about where you will live , how many children you will have, what vacations you will take. You look forward to a happy life together.
Especially being so young and naive you are not imagining all the heartbreak and loss you will have to go through. It’s a part of life and how you cope and support each other as a couple has as much to do with how you get though these things together as the actual loss itself.
As young couple , we turned into young parents and we were motivated and determined to build a good life. We had a son and then a daughter, and then we bought a house. Things appeared to be going well or so we thought
Our daughter was struggling and wasn’t developing language. She began to disappear before our eyes. She stopped responding to her name and had some different things she would do. You pushed to get her help when the doctor kept wanting to wait. Things began to get more difficult. She would scream and cry for hours and wouldn’t allow you to touch her. You never left her side. She had many behaviors , she would head bang constantly , flop to the floor and you were so patient, so loving to her. It wasn’t always easy.
We were waiting on an appointment for an evaluation. The day finally came and two weeks later we went to get the results. I sat directly in front of the doctor and you sat over to the side observing , quietly , calmly. Then with one word that bubble popped, turning our world upside down. ” Your daughter has autism.” Tears poured down my face and you stared straight ahead, the rest was a blur.
You held me in your arms while I sobbed You wipe my tears and told me everything would be ok even though your own heart was broken too
You stood strong and tall so you could hold me up when I need to lean on you .
I yelled how unfair it was , how could this be ! And you tried to keep me calm and reassure me.
I didn’t understand for a long time how it was so much easier for you so accept. How you weren’t as sad as me. I didn’t realize that you just as devastated as I was, but was more concerned with being strong for me and our daughter than yourself. You cried alone , you grieved on your own time when no one else was there.
As time went on you never wavered, and we went through some really hard times. You always loved her know matter what.
You and me , we don’t see eye to eye on everything. Actually there’s A LOT we disagree on.
But ,The important things we agree on. We have agreed our daughter will be loved and cherished, no matter what. She deserves to have the same experiences as everyone else. She will be treated with respect and love , and not left out. We will bring her out with us whenever possible. We will kiss and hug her no matter how hard she squirms and pushes us away. We would do anything to ease her struggle and help her.
It was you who through her in the air and bounced her over and over. It was you who kept trying to get in her world until she let you in, never giving up. It was you who made her feel safe. You were the one who found her when she eloped into the neighborhood full of woods and a pond. I was so terrified , and you brought my baby back. You were the one on the other side of the phone who took the brunt of my frustrations and tears. You always gave me grace and were my sound of reason.
Well Mostly you gave me grace, after all you aren’t perfect and this life can be really hard. There is lots of frustration, guilt and fear. The early years were difficult but you were willing to try and take her anywhere where I wanted. You would be the carrying her over your shoulder when things didn’t go as planned.
You were the one who knelt by her side when she had her first seizure and rode in the ambulance with her. I was frozen in fear.
You are her hero. She is daddy’s little girl and I don’t need her to say the words to know how much she loves you and fells safe with you. I know because I feel the same way. You have a way of making everything okay, even when your crumbling inside. You never show it. You always make us feel safe.
You love us , put up with our crazy and take care of us.
We have been through some really hard times, there were times I thought this life could break us . We found strength in each other and in our daughter.
We are always able to rally around her , encourage her and believe in her.
We have a beautiful family, four amazing kids and an incredible bond . Best friends underneath it all
Things get hard at times, we argue , yell and bicker. We get angry and resentful but we always circle back to each other , our children, and especially our daughter. Her needs are significant and she is the ties that binds our family together.
You are the glue that holds me together. You still wipe my tears and let me know it will be okay. I couldn’t of asked for a better father for our daughter, or a husband for me.
I am going to a dark place and I can feel it happening and feel powerless to stop it
I am tired of being knocked down by autism
Not autism itself but by the effects of it
When I feel like I have accepted it . Moved on
Made the best of it
But it still can knock me down when I least expect it .
The feelings
I thought I was used to it ,that I forgot about them
The heavy , the why and the unfairness of it all
It always comes back to haunt you
I know brighter days are ahead but it’s hard to see
Through the tears , the frustration , the exhaustion
I’m battling my own mental health and I’m weary
The joy , the triumphs and the breakthroughs usually over shadow the rest
But they are always there lurking underneath , usually pushed to the darkest corners of your mind far away from your heart. Until they come to the surface sometimes with no warning and take on a life of their own.
It crushes your heart and consumes your every thought,
When the darkness stares you in the face
Why
Why does my baby have to suffer like this
Why is she put in such a vulnerable position
Where things can happen and you ‘ll never know
Why can’t things be better
Where we live in a world will people care just as much about disabled adults as they do disabled children and in turn just as much about disabled children as typical children
Where it matters what happens to them and who is taking care of them
We want to protect our children always but we can’t be with them every waking hour and even if we could we won’t live forever
What will happen when I’m gone
But then I walk in and she is sitting there with her bright eyes ,so beautiful I can just get lost in them, my heart clutches as I lean in for a hug and she squeezes me back, something she has only done in recent years.
I watch her as she goes in her room and comes out with her tiger , she is having him hold a dinosaur with a tutu and she is laughing as she is showing us. That laugh is medicine for my soul.
She is so happy, so unaffected by the sadness of the world
One of the biggest blessings of her autism. The worries of tomorrow slowly slip away.
My daughter is a gem, precious and full of beauty. I am forever grateful to have her as my daughter , she shows me the light through her eyes and makes me appreciate it, feel it
She will always be my reason to keep fighting , for her and others like her. My motivation to wipe my tears and hope for a better tomorrow. My love for her will always trump everything else and give me the strength to stand tall beside her.
It seems like a million years , it surely has to a lifetime ago when we first met .
I was just a teenager but I had lived some life already
I was babysitting for a mutual friend .A house that was a hangout , a gathering of all the wanderers at different times. A house you frequented at the same time as me.
You could call it destiny I suppose
I remember the night perfectly , I was sleeping over because I was babysitting. First we were in the living room chatting , and then we moved to the kitchen. We talked all night long it was as if we knew each other our whole lives. We were still talking when the sun came up and we walked to the store and got hot chocolate . Of course everyone was joking and making comments and we just sat there rolling our eyes but I was secretly smiling inside .
You drove me home and we looked at each other and leaned in for a kiss but I was just a peck , you were trying to respectful or running scared not sure which maybe both .
Later that night you invited me for the ride to drive your Dad home to the Cape. When we came back from the ride we kissed in the car.
We went into our friends house and my heart was still skipping a beat. Later , I looked down at your ring and it was turned around with the heart turned in, meaning you were taken.
1992
I tried not to get too excited. I had been hurt in the past .
Going forward we were inseparable. We were either together or on the phone. Instant best friends , in love and connected .
You put my heart back together piece by piece.
You saved me in more ways than one . A year and half later we became parents to the most perfect baby boy. We became a family . We loved , we argued , we navigated family drama , we merged as one.
July 1993
There have been so many ups and downs , and there have been hard times , devastating losses , heart breaks , more love and joy than I could of ever imagined in a lifetime .
At the end of the day we have each other’s back Always .
I knew you loved me from the minute you held me. You are very big , Larger than life my mama says and your voice is gruff , some may even say you look intimidating but not me .
I knew you would be wrapped around my finger even then. When I looked into your piercing blue eyes I felt safe.
You fed me, you held me, you made silly faces all the things grandpas do. As I grew things inside me began to change.
Mama was worried but not you, you always reassured everyone that I was fine.
I stopped responding to my name and really any sound at all.
But you found a way to reach me, you would tap on the window with your big hand and I would come running and you would scoop me up into a big hug and I would laugh like crazy.
As time went on it came clear the typical path was not for me to follow.
You didn’t care and I think you loved me even more.
Everyone would try to get me to talk and they would be in my face, I know they were just trying to help and mama was so sad but I couldn’t do it. You would tell them to leave me alone, that I would talk when I had something to say .
Of course it wasn’t true but you picked me up and threw me in the air and it made me so happy, I would smile and giggle, I needed the break.
When we come to visit I would find you in your room and I would crawl into your bed. I would jump and crawl all over your bed, you would embrace me and I would lay with you at a time I didn’t allow many to even touch me .
But you got in, Somehow you found a way.
You loved me so much, you didn’t care I was different, you thought I was even better .
You were so big and loud but somehow you brought me comfort anyways.
When ever we were somewhere and I got overwhelmed you would take me outside for a walk and just let me run. You always had my back , Papa .
Your name was one of the first I said back when I was saying words. I wish I could say it again for you to hear.
I do point to my eyes and heart and point to you to show you I love you . You know I do right ?
I know you can tell . Our love needs no words.
As I got older, I saw you less but every time I saw you , you would ask where’s Papa’s girl and I would smile and laugh and come over to you.
You would spoil me with treats and bubbles and love and it meant so much to me.
You started to age and stay home more but I was still happy every time I saw you. You always made me laugh and feel safe. Our bond was so strong.
I wanted you to hear my voice again, I tried but I just wouldn’t work
Then one day papa you were Just gone .
When I went over your house it was just grandma now who I also love so much but where are you ?
I think someone said the hospital but I’m not sure what that means
Where did you go, no one told me
You were just not here anymore
I never cried because I didn’t know to be sad
But I won’t forget you , how could I
Just because I can’t talk, I can still love and miss my papa so much.
We went to the pond and let go balloons for your birthday . Mama said they would get to you , I guess your in the sky now . I laugh because that seems so silly. But I guess it’s true
I will never forget you papa and how much you loved me . They way everyone drove you crazy but I never did .
I don’t why I was so special to you, but that was just the way it was. You and me against the world
Papa the words are starting to come out now and I can say your name again . Mama showed me a picture and looked surprised when I said your name . She couldn’t believe I remembered .
But how could I forget you ?
I hope you can hear me. I hope you can see me still .
Your girl , you said I would talk when I was ready and it’s still really hard for me but I am doing it .
I told Mama I love you all by myself , she smiled and cried , you would be so proud . I can give real hugs now too . I wish I could give you just one more
I love you so much Papa ! Thank you for loving me know matter what and Always believing in me.
I am sorry it took so long to find my words and you didn’t get to hear them but I know you are guiding me from the sky .
There is no last minute impromt trips that are met without resistance, Meltdowns and at least a few tears …
Sometimes you wonder if it’s even worth it .
We are taking a day trip to Martha’s Vineyard , mostly because my sister is there with my niece and my 16 year old daughter . I am venturing down for the day so my other daughter ( Kierra ) can join them for a few days .
Me , Alyssa and Kierra will drive down the cape , park the car take a shuttle to the ferry and board the ferry . It’s sounds So simple doesn’t it ?
Again with autism and anxiety always looming in the background things are never easy .
Alyssa does pretty well out and about . She has come a long way . I would never even dreamed of attempting this a few years ago without my husband . When she was younger it was all hands on deck all of the time . It was always plan b and c , divide and conquer if necessary, always have a back up plan and an exit strategy.
When we made the plan I thought sure she will enjoy getting out for the day , she spends too much time in the house I should get her out . She generally enjoys being out.
She had adapted and learned and really had come such a long way . Until Something upsets her , confuses her or triggers her .
It is almost impossible to predict
So you try to plan and prepare but sometimes it doesn’t make a difference And sometimes you decide to wing it
We were getting ready to leave rushing of course , running late and my daughter was looking for something to put her stuff in . I told her I have a backpack in my room she could take that.
Never simple
Alyssa decided that she did not want the bag to leave my room and she started protesting AKA yelling
I told my daughter wait until we get in the car run back in the house throw her stuff in the backpack and bring it out after
I though it went without saying don’t let her see it . It didn’t, Kierra comes out with the bag in her hand . Alyssa started screaming And gesturing to the house
Non verbal does not mean no communication her point is loud and clear the bag goes back in the house , she then got out of the car prompt dependency out the window. She was going to grab the bag her self . I told Kierra to bring the bag back in the house and I would go get it , hide it and put in the back of the car .
I tried backing the car in the driveway but she’s too smart she knows I’m up to something and I park and open the back bit of course it won’t open . She gets out and inspects the back . She is on high alert and there is no way to sneak the bag at this point .
Again never simple
I switch tactics show her the bag and tell her we are bringing it . She begins to escalate, I tell her she can stay home I am taking the bag and leaving ~ not my finest moment I’ll admit . She continues to gesture to my room while getting more frustrated . I tell her Kiki needs the bag . I show her what’s in it .
I tell her you can carry it and put in the car
That seems to help except she takes the bag and throws it twice . And I’m Not sure if my daughters lap top is in it .
I tell her no and go to the grab the bag , she takes it and puts it in the car .
This is by no means the worst meltdown we have had or even a big deal in the grand scheme of things . It’s just added stress added frustration and extra time and steps that need to be taken .
It can be exhausting though . For us and for her . I am already questioning my decision to venture out alone . I will be traveling back ferry and shuttle alone just me and her .
I don’t know if she will understand that the girls and backpack are staying .
The shuttle ran late and missed the ferry
The next one is a freight ferry with limited passengers , I don’t know what that means but we are getting on .
On ferry to Martha’s Vineyard
I know I am blessed I am with two Of my beautiful daughters on a beautiful day , headed the the vineyard . I just wished things could be simple sometimes .
I am already getting anxiety about the return trip . But we are on route too late for doubts now .
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
