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 .
This is our 29th Valentine’s Day together. Kind of blows my mind when I think about us all these years later.
Valentine’s is just another day in our crazy lives, no reason to make a fuss or waste money on cards. We know exactly what we mean to each other.
We are best friends underneath it all and we have helped each other through some really tough times.
We don’t always see eye to eye. That is an understatement.
I was recently asked how we have stayed together. I honestly don’t know.
There are times that we barely speak. We just coexist in the same household. Times that we can’t get on the same page about anything.
Then there are times when I think the sun sets and rises on his back. When I can’t breathe at the thought of doing life without him.
He is a great husband. He takes care of me, loves me, does numerous things without me asking or even realizing. I can totally take him for granted. I know if I need him, he’s there. That goes both ways.
We have grieved losing parents together, dealt with an autism diagnosis and all the emotions and difficulties that come with it. We share 4 children. The bond underneath it all is built on love and strength.
He is an amazing father. When I watch him with our children I fall in love with him all over again. He is so loving and patient with our daughter. All three of his girls adore him. He gives them safety, security and unconditional love.
He can lose his patience and we all drive him nuts but the way he loves his family makes me realize how lucky we are.
Underneath all the disagreeing, the bickering, the frustration is a man who loves with his whole heart and soul.
Just don’t ask him what’s for dinner
Happy Valentine’s Day Babe, all I want is a spot on the couch, to watch our show (and maybe a good snack)
Please don’t tell me you are sorry if I tell you my daughter had autism , I interpret that as you are sorry for my daughter. Yes I grieved as her mother that is my right not yours. I want you to celebrate my daughter I am proud of her and adore her. If I confide in you a difficult situation or struggle she is having, then it ok to say sorry but never for her.
We do not live a sad life. It is at times a hard life, I won’t deny that. We have lots of trials and tribulations just like everyone else. Our life is just different. We celebrate every accomplishment. We laugh and love and are grateful for every success.
Autism affects the whole family. The siblings endure a lot. Try to include them when you can. It encompasses us all and we try very hard as parents to give everyone what they need but sometimes it is an impossible task. The siblings are the true unsung heroes in this life.
Autism is perplexing and mysterious. It does not discriminate. It is nothing we did or didn’t do. It does not come from over use of a tablet, autism was around long before iPads existed. It doesn’t always make sense, even to us. Please don’t make comments on your theories about our parenting , we carry enough guilt ourselves. Believe me no one could scrutinize or judge us harder then we already do to ourselves.
Autism is a spectrum , and yes they can be labeled mild, moderate, or severe , but it’s not linear. It looks different for everyone. Each individual has their own Struggles, strengths and experiences. It is an invisible disability and you can’t always see the whole picture. Yes of course there are similarities but there are way more differences. Do not presume to know our journey because you know someone else with autism.
As we walk into autism awareness month , I do it with pride. I am more than happy to talk about our differences. I want the world to understand our journey. Compassion and kindness go a long long way in this complicated , beautiful, and colorful life.
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.
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 .
Autism adventures with Alyssa 