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 .
. It’s crazy how I can still feel these emotions even today.
An open letter to my daughter.
My baby
My sweet daughter
Things certainly took a twist didn’t they?
Autism
I was floored by word
Angered by it, afraid of it, unsure of it
It didn’t seem right my beautiful, Bright girl full of wonder, full of light
Certainly filled with fire
I felt like I was losing you
All of the other kids were passing you by
It Felt like the world was moving so fast around us but we were in limbo
The tears fell fast and hard but never because of you , always for you
For your frustration, for what you were losing out on For how hard and unpredictable things were for you.
I wanted to fix it, fight it, I wanted it to not be
They painted a grim picture
I didn’t believe it, I wouldn’t
They didn’t know You your spirit how stubborn you are
In time I learned a different path.
I learned that your autism is a part of you, not all of you but like the colors of the rainbow it’s hard to know where it begins and ends.
I also learned to not only accept it but to respect it because it is a part of you and I love every single part of you.
I love you to the moon and back, you can say that now
The girl with no words
I love you more than life itself
You make me laugh everyday
You give the best hugs, you made me wait 20 Years for them and I cherish ever single one
You are happy and perfect just the way you are.
It’s not my Job to fight the autism, to change you
It’s my job to help you find your voice and show the world how amazing you are. I see that now
I will protect you and fight for you until the day I die
Until then your my side kick
And as much as I like to think I am showing you the way. You have shown me the way.
You have taken me on the less traveled path and it’s been beautiful. Lots of twists and turns some uphill battles along the way but the views have been breath taken. The unknown is at times scary but together we will come on stronger than I could ever imagined
I am so grateful and blessed to have you as my daughter, you are and always have been enough.
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.
Moms always have a tremendous pressure on them. It is challenging balancing parenting,marriage, maintaining some kind of order,work if you are able to and then you add the pressures off keeping up with the other ‘moms’. The moms that post on Pinterest and Facebook who live seemingly perfect lives,have perfect clean houses, and who seem to sail through momming effortlessly. It is no wonder we feel like we are struggling.
Every mom feels overwhelmed and under appreciated at times.
When you parent a child with high needs,that pressure intensifies. When you have a child who requires extra care to function successfully in life, which many times you are unable to provide yourself the feelings of inadequacy doubles.
When it is on you to make sure your child is given their basic rights and that is a constant uphill Battle. When you are battling with schools,insurance companies, being denied services, put in endless wait lists to try to ensure your child had the best chance,or any chance of success.
When the days are so long and you are in the thick of aggression, self injury. Eloping, meltdowns and you don’t know if you are going to physically and mentally make it through another day, and you look at your child that you love so much and you are filled with immense guilt that could eat you alive. You just want your child to be ok, and for you to be Ok. When that doesn’t feel possible it begins to take a toll.
When all this responsibility falls on you, because you are the mom. The weight at times becomes unbearable. The constant feeling of failure weighs so heavy on you heart.
When you have a child with a disability you become more than a mom, you become a caregiver.
Of course you don’t feel that way, you are the mom If not you, then who? It’s your instinct to do whatever it’s takes to help your child. To be whatever you need to be to be. You love your child and are fiercely protective.
The reason it is so overwhelming is because you are wearing too many hats, there are too many plates spinning. You become way more than a mom. You are a mom, a therapist, an advocate,a case manager, an educator the list goes on with the more needs your child has.
Many of us are not equipped or qualified for these jobs. You can not be all these people at once. That is why we struggle so much and feel we aren’t doing enough. We need help. Unfortunately a lot of times there is no help available and we have no choice but to step into these roles. Even when you can access help it becomes another job getting them to and from.
It leaves you exhausted, mentally drained and feeling bad about yourself as a mom.
You are more than a mom , you are more than a caregiver.
You are a beautiful person and the reason you feel this way is because you are an amazing mom who has taken on too many roles. You can’t possibly be successful in all of them.
You need take time to to just love your baby, to smile, to feel the sun.
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.
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.
You and me , we don’t see eye to eye on everything. Actually there’s A LOT we disagree on.
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.
You feel as your baby is being taking away from you , and all your hopes and dreams are shattered in one big swoop . With one word
It is heart breaking
Do not let anyone tell you it is not okay to feel this way
You own those feelings , this grief it comes from a place of love
I will tell you this though that is still your baby and you will love em more than ever. Don’t worry mama that will never change
But you will change , it will take time to get your bearings and that is okay. You come back stronger and fiercer than you ever imagined
I will not lie, it can be a really hard life. You need people to sit with you in the dark, people who understand the pain , the worry but also the joy and triumphs
Things will look different than you thought , things will bring you to your knees , but you will Also experience more love and appreciation for things you don’t even think twice about now
You will need help , please take it you can not do it all
And I will tell you this ,
Your child has no limits , no one can see into the future , Always keep hope and faith at arms reach they will get you through your darkest hours.
Forgive yourself often, we all have moments of weakness , do not feel guilty about your feelings Process them and move on.
I will be here and so will many mamas who have walked this life before you.
When you are overwhelmed , when you hit rock bottom I will sit in the dark with you and listen , no judgements , no platitudes
Sometimes you need to sit with your feelings the grief, the anger, and the sadness .
Tomorrow will always bring a new day
An opportunity to stand up and try again
It is hard but there will be joy , there will be love and there will be laughter
So much laughter
Do not sit in the dark alone, it will be your instinct but trust me when I say you don’t have to walk this path alone.
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
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
Autism adventures with Alyssa 