The road less traveled

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.

Her future

The future is so scary to think about. I try to focus on the here and now,what I can control. As I get older it becomes a more of a reality.

My mom passed away recently, and my Dad 8 years ago. Ten years ago they were both vibrant and actively involved in our lives.

Of course they were aging especially my Dad, as he is a bit older than my mom.

My mom declined quickly and the change over the last few years was unimaginable.

It makes you question your own life. Although it is incredibly hard, they left behind all adult children.

My daughter will never be able to take care of herself, no matter how old she is.

Looking at pictures, we are them 25 years ago, my baby is 18. 20 years goes by in a flash. A blink of an eye.

What will happen to Alyssa?

Who will take care of her?

The thought of her in a home of any sort guts me, it literally brings me to my knees.

I am extremely fortunate that she has three siblings. They all love her and at this point are willing to take care of her, if all goes as planned.

Things can change. The best intentions can go awry.

They will have careers, marriages and likely children.

Will she fit into their life? Will they be able to advocate for her.

I know all autism is difficult but there is a component to non-verbal that makes things challenging on a very different level.

I know I can’t control it all. As fast as the tears flow and the thoughts creep in the still of night, much of it is out of my control.

My mom passed away at age 73. Alyssa will be 53 if I am able to live that long. Thank God I had her young.

I know her siblings will do the best they can to take care of her.

It’s just hard to think about.

I will do my best to help her communicate and gain skills as long as I can.

This girl is everything to me.

Blissfully unaware

Autism is a tough road. It really is, so complicated and so hard in so many ways.

From the day you hear the words, you are catapulted into an alternate reality.

My daughter was diagnosed at 2 years old and it has been a long hard journey. The emotions that you feel as a mom watching your child struggle will bring you to your knees.

Everything that you thought you knew about your life changes in an instant.

Relationships change, friendships waver, and invitations stall, and these things are painful realities on top of the the challenges your child is facing.

Family support is so important. I have always been told how strong I am, and asked how do you to this.

I had an incredible role model. My mom modeled strength, compassion and love. She taught me to keep going even when the odds are stacked against you.

My mom never faltered not once when it came to my daughter. She always loved her fiercely. It didn’t matter that she was different.

She always acknowledged her. She made a point to make sure she was never left out. She loved her so much.

When your child has a disability, whether you like it or not,they are treated differently. It’s not done purposely but people don’t always know how to interact. They shy away or overlook them. At times they are ignored,or forgotten.

My Mom learned how to fit into her world. She adored Alyssa. She always supported me and helped anyway she could. She loved Alyssa so much and that helped heal my heart. To know that others loved her the way I did meant so much to me.

She would always to take her for a walks and blow bubbles with her. She would smile and let my mom hug her.

She babysat and spent time with all of my kids. She was an amazing mother and an Incredible grandmother.

She just recently gained her angel wings and although we will miss her enormously I know how blessed we were to have her. She left a lasting imprint in our lives.

I don’t know how much Alyssa realizes or understands, death is an abstract concept. Her Grammy has been gone for a while, recovering from sugery and the medical complications that came along with it.

It’s a blessing that she is blissfully unaware and doesn’t have the pain of grieving some she loves so much,but at the same time there sadness in that too.

I know she will be watching over Alyssa and will see all the great progress she is making. Being loved by her has made us better.

Hug your loved ones close.

Rest in sweetest peace mom 💕

Disipline

Autism and discipline is a sticky situation.

Are all behaviors due to autism? No of course not.

Is it easy to recognize the difference, No it is nearly impossible.

It’s a very fine line.

A therapist one told me after I said she can’t help it she has autism, she replied no she is three. Not everything is autism. I scoffed and inwardly rolled my eyes. What did she know? The last therapist suggested I let my daughter continue to bang her head and ignore her, that she would stop on her own.
Well not with a kid who didn’t feel or process pain.

It’s a hard balance. In hindsight I should of been a little more open minded. I may of created a monster or at the very least a queen.

It is so difficult when you have a child with no speech and limited understanding. Who becomes very overwhelmed and over stimulated.

You have to create limits but you also have to pick your battles.

We go out of our way to keep her happy and avoid her triggers. It is not always possible and she has to learn that sometimes things can’t go her way.

It hard to see her get so upset,especially when it’s hard to talk it through.

Sometimes she gets upset over the littlest things. Her anxiety grips a hold of her and the whole house too.

I want to keep her as happy as possible, because things are already so hard for her. I also want to keep the peace so to speak.

I think our children need compassion, understanding and empathy. It appears that they just want their way but they have such a hard time regulating their emotions.

They are smart though and manipulative they learn fast what works.

You have to pick your battles. You have to decide what is most important and start there.

Physical safety is most important to me. I do not tolerate her hurting herself or others ( There are times when you don’t have a choice obviously and need some outside help)

We try to instill respect for peoples things and their personal space ( it’s a work in progress )

We teach apologizing and never withhold love no matter what.

I have boundaries for her and others and it’s always something that can be improved on.

It also depends on how much they understand and are aware of.

We do a lot of ignoring as long as she is safe.

I also give her a lot of choices. And lots of chances.

Most times I give in because her smile melts my heart .

I am not perfect, I yell way more than I should and sometimes I lose my patience. I try really hard to be calm and patient.

Discipline in not punishment it is teaching. Limits and boundaries are important and needed.

All I know is I love this girl with my whole heart and I try my best to make her happy, while teaching her to make the best choices she is capable of.

She is lovable, sweet and had a beautiful heart, she shows remorse and tries to please us as much as she can.

All in all she is a great girl and is willing to put the work in as much as she can.

This is 7

I never understood the expression one step forward two steps back the way I do know.

Regression is so hard. You are finally coasting along and Boom it feels like the wheels start backsliding and you are powerless to switch directions.

Aggression is a so difficult. It’s so hard to pin point the trigger if there is even one that has any rhyme or reason.

When Alyssa turned 7 she was finally settling into autism. I wouldn’t say it was easy but we had easy days. I manage to keep three kids alive for a year.

It was like a switch went off and Alyssa’s aggression came back, and this time it wasn’t just our family but it was other kids in the community.

She would also push her sister who was one now and if she walked near her she would push her down. We had To be careful, she didn’t hurt her accidentally.

The thing was it seemed completely random. At times she was fine and other times she would dart out completely unexpectedly and lash out at another child for what appeared to be no reason.

It happened on vacation, at the beach and at a the park. we had her teachers trying to help figure out the trigger.

She was having a hard timeadjusting to her sister. A baby was one thing but a walking,bossy toddler touching her stuff was another thing all together.

Things were going so well and well that’s autism. There is always an unexpected twist brewing. It could be a good twist or a difficult one.

It was an very stressful time.

It turned out her trigger was anytime a child whined or cried. Once we figured that out it was easier to predict and intervene. The cries triggered her because they reminded her of her sister who she wasn’t a fan of. She was in that stage and was a walking whining invasive little thing.

Eventually this stage passed and we could finally breath. Don’t worry Kierra was relentless know amount of pushing or screaming imitated her. She was determined to be in her big sisters orbit.

Alyssa wasn’t ready quite yet, but you couldn’t see her slowly allowing her into her world. Anytime she Kierra was near her she was allowing it.

She didn’t know quite what to make of this new version of the baby who didn’t move or touch her things.

Alyssa in general was getting into
A groove. School was going well and she still seeked sensory but not as much. She was able to regulate herself more. Did I mention how cute she was. 7 was a bumpy year but we got through it.

Alyssa age 7

Autism awareness day 7

autismawareness #autismsiblings #autism

This is 4

Alyssa began to settle down a bit at four. She was still very much a sensory seeker and needed to be physical or in water to stay regulated.

It was easier to achieve that in the warmer months.
She was generally happier and calmer in the summer a pattern that I had yet to realize. She still struggled a lot but the intensity had simmered down a bit.

She still had no language but her aggression has simmered down. She was thriving in school. She was having some success with pecs mostly at school.

She had learned to point to her eyes to say ( I ) we would say Love and touch our heart and she would point to to us for you! We would do it everyday She also learned to blow kisses.

When she was happy she was the absolute sweetest.

Autism awareness day 4

Alyssa age 4

autism #autismawareness #autismlove

This is one

Autism, I hadn’t heard the word yet.

Our concerns were growing by the day

Her first year started our typical. She reached all of her milestones, was walking and starting to say words.

Things were good. I had a three year old bursting with energy and endless questions, a curious one year old toddling around the house, and we getting ready to purchase our first home. It was an exciting time.

As the year went on we noticed differences. Alyssa didn’t appear to be able to hear. She didn’t respond to her name or any sound at all. Well except Barney if you turned on the TV she would come running.

At first it seemed like she was ignoring us, involved in what she was playing with, typical toddler but as time went on it happened more and more until she was barely responding at all.

We immediately scheduled hearing tests, they needed to do two to figure out if she could hear or not. We thought she must be deaf. Her emerging language stalled as if someone hit the pause button. Which made sense if she weren’t able to hear, but she could.

She also began to resist getting dressed and didn’t want clothes on. She stopped napping. She was spinning in circles and spinning toys, wheels anything she played with. I wasn’t sure if she was understanding what we were saying to her.

There was no Google, no autism screenings or general knowledge of autism to even have that as a concern. Her doctor wanted to wait until she was 2 to refer to early intervention.

We were concerned about her language not developing.

She had constant ear infections.

She was mostly her happy little self. She loved the bathtub more than anything else, except maybe her brother she adored him. She constantly liked to be bounced and tickled her giggles echoing through the house. She also liked to be naked and barefoot. She was strong willed.

She was a beautiful little girl. To look at her you would think nothing was amiss. I was getting more worried and I had a feeling deep in my gut that something wasn’t right. I loved her so much and I just wanted her to be okay. I tried to push it away. Toddlers are busy,they are silly, she is fine.

We will just get her speech therapy and they will get her talking.

This picture was taken on Christmas Eve. She was 20 months old. It was our first Christmas in our new home. We had lots of family over. She cried almost the whole time. At the time I thought she was cranky.

Looking back I know she was over stimulated. I can tell by the way her arm is over her head. She trying to block imput from coming in. I would learn that later in this journey I had her in a dress with tights, shoes and a pony tail in her hair. It probably made her so disregulated. Another word I didn’t know at the time.

This is why autism awareness is critical. We have come so far since then but there is still work to be done. We need share our stories, show all sides of autism. We need to educate,advocate,and stand strong.

Autism awareness month day 1

Alyssa age 1

Share a picture of your child prior to diagnosis on the comments 💕

autism #autismawarenessmonth #autismacceptance #specialneedsparenting #oneyearold

Dear van driver

Dear van driver ,

I am trying to give you grace , because you are new. I know you look at my daughter, and don’t see how vulnerable she is.

Autism is an invisible disability. You can’t see it by looking at her. You can’t tell how impacted she is by it.

You see a young lady who is pleasant , and while quiet, her smile is as bright as the sun.

There is another side to that smile. There is anxiety, rigidly and lack of the ability to communicate.

You see my daughter looks quite capable and she is of many things , but there are things that don’t quite resonate.

She is non verbal. She can not speak or make a phone call. She would not know how to react in an emergency. She does not know what to do If she were hurt or in pain.

I guess no one communicated to you about any of these things. You dropped my daughter off and left her alone. My daughter is never alone the fear and confusion of that alone could cause a meltdown.

You showed up early and no one was home and you left her here anyways.

You could of put her in jeopardy. You left her unsupervised and unprotected.

There is much controversy and differing opinions about labels and functioning levels in the autism community. Many think they are unnecessary and negative, some even believe they are degrading.

I have to disagree I thing they are quite useful and actually a needed tool to keep our children safe.

My sweet girl ;
mommy loves you so much and will do anything to keep you safe,

I am so sorry that you were left all by yourself

Thankfully Daddy showed up minutes later and you were sitting on your bed taking off your shoes. He had quite the surprise when walked in and saw you. I’m not sure if you even realized no one was home.

It wasn’t understood how protected you need to be

I myself do not like to say you are low functioning or even intellectually disabled. In my eyes you are so smart. I am not measuring those unimportant things on a paper.

I measure things that mean so much more like your heart and , your spirit. There is no number that can represent that. How intuitive you are , and how the way you observe and take things in. The way your laughter can ring through the darkest of days and bring a smile to my lips. I can’t help but to feel the joy that radiates though you.

A have to make a phone call tomorrow. I have to emphasize how this is unacceptable and you can never be left alone.

I have to use all the words that no one likes to convey exactly what you understand and what your “level” is and I will make it crystal clear , I will shout it from the rooftops if needed to keep you safe.

I don’t use these words because I think any less of you because baby I think the world of you . In fact I put you on a pedestal

Your are not less worthy because of these things you just need more help and that is okay .

I work with you everyday to help you to communicate and learn and in hopes that someday these things will improve.

You have defied the odds before and I have no doubt you will continue to do so.

autism

My Valentine

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)

love #Valentineday2022 #autismfamily

Thanksgiving 21

I hope everyone had a wonderful thanksgiving!

We had a good day at home with family.

Alyssa had zero meltdowns. Zero

That’s amazing! We had four extra people here.

She stayed out with us the whole time! She always retreats to her her room ( or ours) with her iPad.

She has never done this!

She peeled potatoes and carrots, the girl who we were told may never use a fork.

She helped make pudding pies and helped eat them too.

She came right to the table with no hesitation.

We settled in after and watched a Christmas movie with me. She lasted an hour and 12 minutes. I can’t tell you how much it warms my heart.

Never give up hope! Things happen on their own timeline.

We are getting ready for Christmas slowly. She gets overwhelmed and upset by any change. We will be bringing stuff out and decorating slowly.

I am so thankful for all her progress. Every year she changes and is still gaining.

grateful #autism #thanksgiving #choosehope