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 .
Earlier in my journey I would often wonder why, Why my daughter, our family? It seemed unjust,unfair, why did this happen to her.
It didn’t make sense, when I looked around I saw other families and their children and everything looked different from ours. Easy, simple, typical We were anything but. We were loud, chaotic, and everything was challenging.
I searched for a reason, for something that could explain it. There wasn’t an answer.
This was the life she was given, the life we were all given. I didn’t know anyone else who had a child with autism. Her challenges were very apparent. We stood out. We were stared at and not understood.
Over time I realize it didn’t matter why. I learned that differences are okay. Autism has its struggles I do not dispute that, and some of them are really hard.
Autism brought me my daughter and that I would never change. It made me who I am, it changed me at my core. It showed me beauty I would be unaware of. The beauty that lies inside my daughter is beauty like nothing I have ever known. Her innocence, her joy, is like no one else. Her heart is pure, her smile is everything I wouldn’t have experienced the love and connection shared with a non verbal child. It is a bond like no other.
She wouldn’t of been able to bring hope and comfort to others on this journey. I wouldn’t of met so many of the amazing woman I have met and formed friendships with. I wouldn’t of known the strength I possess had autism not entered our lives.
This life may be the road less traveled but it is a beautiful life nonetheless. It is a life with trial and tribulations like many others, but that teaches inner strength and unconditional love.
It’s a journey of mixed emotions where you often find yourself smiling through your tears.
We had an amazing vacation. Alyssa did great! Of course there were a few rough patches but that is to be expected. There have been so many transitions and change can be hard for her.
We went to Hollywood studios on the Fourth of July and it was hot as hell! The heat makes it a little less enjoyable but she was a trooper. Thankfully there are a lot of indoor rides so we were able to get some relief.
We had a lot of fun and she was happy all day. She loves the rides and we saw a Frozen show that she really enjoyed.
As we were leaving you could see both fireworks from Disney and Epcot and that was really cool to see both at once. Her face lights up.
I think she is ready to go home.
We stopped in South Carolina and spent an extra day here. One last day to rest. She transitioned great into the hotel. She had a few tough moments but she didn’t sleep well and she was a little confused by the extra day, which our bodies needed but I don’t think the day met her expectations. We were able to take her swimming Which she enjoyed and then she relaxed and then slept.
We have a very long drive back. It is 14 hours with no stops so hopefully we can head out early and she does well.
She just amazes me everyday and she is understanding and remembering is increasing so much. Unfortunately so is her rigidity and need for control which also intensifies when she gets anxious or expectations are thrown off. That is going to happen on this type of vacation. Especially when traveling with the griswalds.
She deserves these experiences and exposure. She thrives and is so happy. Even though she has had a few hard moments and they are hard for all of us when they are happening. Things are never just so when vacationing with autism. It stays on the background mostly but it likes to remind you it is here to keep you on your toes.
When I look back at this vacation, I will not remember this little bumps. I will remember us all being together and making these memories.
As I sit here and watch you try to answer questions, I can see how hard you are trying. It makes my heart ache seeing how hard it is for you, a task that should take such minimal effort. At the same time, to hear you answer with such pride and confidence when you are understood and correct it fills my heart up and I can’t help but to smile.
I am filling out a questionnaire an endless one it seems,all about what you can and can’t do. I have grown pretty thick skin over the years, but there is something about these questions that really irritate me. I find myself writing notes on the side.
See they can’t capture the real picture of you.
They can’t see your heart, your smile, the way you brighten everything around you
I am fiercely protective of you even on paper. Never is not an answer I associate with you. Never seems so negative, so final. So I will continue to write notes to explain, even though it is strictly multiple choice.
Never was used a lot in the beginning of our journey
I was told that you probably never Use a fork, or the toilet. That you would never understand words or speak them just to name a few.
Don’t worry, mama never believed them
I always believed in you and I always will. I will never stop fighting for you, pushing you, or teaching you.
Things look different than I thought they would and it’s okay, because baby you are not less, you are so much more.
More Love, more smiles and more laughter than I could ever imagine. You could even say you are a little extra.
I say extraordinary
You amaze me every single day. You never give up. You are learning and growing in so many different ways and I will be right here beside you to support and help you in every way I can.
I 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.
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.
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.
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.
Autism adventures with Alyssa 