Never give up

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This girl never ceases to amaze me ! Everytime this disorder has me feeling defeated , she brings me back with something unexpected . She reminds me why I have to always keep pushing . Alyssa is non verbal . We were told she would never talk or be able to understand

. I vividly remember being told at an IEP meeting that she would never be able to understand any words without a cue or a picture . This was pretty much the consensus . I refused to believe it. I fought back the urge to lunge across the table . To scream how dare you say such things about my beautiful , intelligent , complicated daughter . I wanted to yell take it back . But I didn’t I sat there and fought back tears and said ; she is starting to understand some words which I thought was great . Familiar things I used the example

If how lately is we were getting ready to leave and I said we are going bye bye go get your shoes she would go get her shoes . Which I thought was great because up until now you would have to point or give her some kind of cue for her to be understand . I thought it showed potential . I will never forget this meeting ; the speech therapist looked at me with such pity and said that’s nice dear . She did not believe me at all .

This was one of many meetings I left in tears , feeling as my heart had been ripped out . But today she understands words , it is still limited but she can understand somethings , and today she ordered food at a restaurant. We were looking at the menu and I was showing her pictures of the food choices and we flipped to the back page and I asked her what do you want . Usually she just smiles and looks at me ( I’m sure in her head she’s like um hello chicken tenders like always ) but I am trying to challenge her . Of course we are at Friendlys and they have a picture of every food item but chicken tenders , so I am purposely showing pics of stuff I know she won’t pick . Well she points to a little picture of Sprite . I didn’t realize the beverage strip was there . I said what’s that she said sprite ( her version but close enough ) I was floored . So I look up a picture of chicken tenders and fries online and she nods her head yes and points . The waiter comes back over to take our order and we order for ourselves and her like usual . Then I look at her I don’t even know what made me do this and I said Alyssa what do you want to eat and I still had the pic on my phone and she said chicky ,( approximation ) and then I said what else tell him , and she said French fries , I could not believe it !

She ordered her first meal and I don’t care that she didn’t pronounce her words exactly !! She knew what I was asking and she answered . It was amazing . I am so proud of her . I know this may not sound huge but it is . In the autism world one little shift , one thing that could seem so minor is so big . This shows true progress , this shows more potential . I didn’t get to video her ordering because well I had no idea that was going to happen but I did get her saying sprite so I will post that . But you know I’m going out to eat again soon so I can . If she will do it again ?? I don’t know but I’m going to try .

#nevergiveup

#donttellmeshellneverunderstand

#ialwaysbelievedinherIalwayswill

French fries

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This is when we drove to Florida a few weeks ago . This is a very recent word that she has been able to say . She is doing so great it’s almost hard to believe it . She has severe apraxia which makes it extremely difficult to make sounds never mind words . Until very recently she has only been able to repeat sounds . For her to be able to retrieve the word and then be able to say it is a HUGE step . Also she just adores her sister . Anyone who thinks that people with autism can’t make emotional connections are wrong .

Letter to my mom

Dear Mom,

I am sorry the end of your life has ended up the way that it has.

It is not how I envisioned it and I’m sure not how you did either.

No your not dying, not in the traditional sense but parts are you are long gone. I sometimes see little bits and pieces of you they come and go.

I’m sure you pictured growing old with Dad and though you had a family and a long marriage filled with love it still seemed cut short when he passed.

This is not the ending you deserve. You were always the strongest woman I knew and now to see you so frail and weak and unaware it breaks my heart.

You were the best mom. Always there when I needed you. I remember laying in bed with when you were reading your books and always asking you questions. You always took the time to answer them.

You worked hard and taught me to be independent You loved with your whole heart. You helped anyone who needed help always.

When I became pregnant at 16 you fully supported me. You urged me to stay in school and you fell in love with my little boy. You let me parent my own way but were in the background if I needed help.

When my little girl was born you loved her too. You were right there when they were born. You let us stay with you so we could save and buy a house.

When Alyssa was diagnosed with autism you loved her just the same. You loved her unconditionally and never treated her differently. You always made sure to acknowledge her and find a way into her world. It wasn’t easy as she was very selective.

She’s was grandma’s girl as you said it.

Of course when Kierra and Lexi came you adored them as well. You always supported everything they were doing. You have them all special attention as you recognized how hard this life could be at times.

We always had a good relationship. I could go to you for anything. You helped me so much when I was struggling with my daughter being diagnosed, you loved her so much and that made all the difference in the world at that time.

I can’t put into words what an amazing human you are. How much adversity and trauma you overcame in your life. How much you would do for anyone. How positive your outlook on life was no matter how much was thrown at you. How much Dad loved you and how loved you made him feel. How big and tough and loud he was compared to your soft and gentle. It just worked.

I am grateful for all the vacations we took together and all the time we got to spend together. I had no idea our last vacation would be the last one. How
Fast this disease would change you, steal you away.

I love you so much and I don’t want you to suffer and be lonely. I don’t want to lose my mom either although in so many ways I already have.

The is a link between you and Alyssa now. The way you understand and communicate is so similar. It’s so unfair.

I hope you remember how much I love you, how much you mean to me and your grandchildren. I hope you have happy moments even when you don’t remember.

I know sometimes you recognize me even when you can’t remember my name. Some days you tell me exactly who I am and are exasperated by the questions. I love your fiesty attitude, it shows me you are still in there. Always done politely of course.

There is never as much time as you think. I hope Know how much I valued you as mother and a person.

Thank you for being such an amazing mom
and grandma,and for loving my girl and always believing in her.

Make the time, hug your loved ones, stop in for the cup of tea, pick up the phone, time is not always on your side❤️

ADA

Today is the anniversary of the ADA otherwise known as the Americans with disabilities act.

This was signed into law in 1990,6 years before my daughter was born.

A daughter that unknown to me at the time,would have a lifelong disability.

I had no idea the services and accommodations she would need.

Discrimination against individuals with disabilities is real and although there are now laws in place it is still happens.

Imagine a life where you have to fight for your child’s basic human rights.

A world that is not always kind to those who are different,

The fact that a law is needed in order to treat our most vulnerable population equally, to prevent discrimination, and be provided with education, dignity, and equality is problematic in the first place

I can’t imagine a life where she is not protected.

Although there are laws in place we have to make sure they are followed. We have to advocate and voice that it is a right not a privilege to have these accommodations and opportunities. We have to teach the world about our amazing children and their difficult journeys.

To educate and bring awareness to the struggle and need for this protection.

As president Biden states,

“For more than 60 million Americans living with a disability,the ADA is so much more than a law. It’s a source of opportunity,participation,independent living and respect. While we celebrate the incredible progress we’ve made, we must commit to the work that remains.”

We have come a long way but have a long way to go.

I never thought about disability rights or laws before I had a child with one. Their potential, their quality of life, and essence relies on them. They are so vulnerable and need us to protect them.

It is up to us to stand up for those who can’t do it for themselves. To love and protect them, to teach them,to give them opportunities and to allow them to lead happy productive lives.

Thank you to all those who help shed light and paved the way. They began the fight and we will follow in their footsteps and make sure dignity and equal access is available for all.

Everyone deserves respect, equality, and opportunity.

My daughter is my world, she is beautiful, and happy but innocent and vulnerable. She and others deserve to be protected and provided with access to quality services and equity throughout their life.

A moment of Love

Alyssa loves with her whole heart,but she hasn’t always been able to show it. Affection and touching is sometimes hard for. Having siblings helped open up her heart more.

When Kierra came along she wasn’t too sure at first and was indifferent and then annoyed. Little by little she wormed her way into her heart.

At first she just tolerated her, which was a sign of love in itself, and then she became her favorite person and one of the only ones she would seek affection from.

For a long time she never initiated affection but would allow us to give it to her. That however is only one way to measure love. Their was never any doubt in her love for us.

A few years ago out of the blue she initiated a hug, and now is very selective about it but will initiate it occasionally. I am very grateful for these fleeting moments. When asked she gives the best hugs you can imagine and you feel the love everytime. She also initiate the blowing a kiss sound another way to show us her love.

She also will take her tiger and have him kiss my cheek, a that’s her way of showing me when she can’t do it herself.

It may not sound like much and it’s something most take for granted,but to me it’s everything.

To the mama still waiting in the wings your day will come. They show us in their own way and that’s perfectly fine too.

#25daysofautism #autism #autismlove

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.

A is for Anxiety

I often say that the A in autism stands for anxiety. The anxiety causing as much turmoil as the autism if not more. I see them as one in the same, each fueling the fire for the other.

Anxiety is a beast. It can lay low at times but once it’s up and running there is no stopping it. I have had anxiety myself for many years. It has completely taken over my life at times. It causes so much inner turmoil. I have been blessed with many types of anxiety and well at times it’s a living nightmare.

It gives me insight to my daughter. To have those feelings and have no language to express it. No understanding of what is happening to your mind and body. That I can’t imagine.

It is so heart breaking to not be able to help her, or find the trigger. Sometimes it doesn’t make sense or seem obvious. You have the autism making her inflexible,unable to switch gears. It can seem so minor but to her it’s not. Lack of sleep, sensory issues, and limited communication exasperate the anxiety and it takes a life of its own.

We try our best to help her through it. To surround her with you things she loves and make her happy. To try to avoid the known triggers although it’s not always possible.

The hardest part is the things that bring her joy also cause her anxiety. The unknown, the change,the thought of something different can send her over the edge.

It is best to stay calm and patient as you help her through it but it is not always an easy task.

Anxiety is something we have to coexist with. The feelings, the emotions and the fear it can trigger can be so debilitating.

It is the hardest part of this life.

That’s why when she is calm and happy it is so treasured.