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

Vacation 2022 Hollywood studios

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.

Typical picture

I was looking through my pictures and I have a picture of all four of my kids. I don’t get these as often as my son has moved out on his own.

I smiled looking at all of them, I know I am incredibly blessed. They are all great kids. They are all growing up right before my eyes.

As I am looking at it, and it is your typical Disney picture in front of the the castle I feel a twinge.

These damn twinges some people refer to them as paper cuts,paper cuts to your heart.

I am looking at my daughter, at all four kids and at first glance you don’t notice. As I study the picture I can see how Alyssa is set apart from the other kids.

Her posture, facial expressions, eye contact, there are differences some subtle some not. A lot of the time I don’t see it, most of the time I don’t see it. She is just her. Today I see it. Today it is Crystal clear.

My other kids are growing up and she is not. She is getting left behind. It hurts my heart and my eyes fill up as I think about it.

It shouldn’t be this way. My heart aches for her. For the experiences she won’t have and for the ones we fight for her to have, because nothing comes easy even things that bring joy. I look over at her and she is sleeping so peacefully and it warms my heart as I wipe away my tears.

Sometimes it just hits me out of nowhere. In the quiet moment of a vacation. I am grateful to be able to give her these experiences surrounded by those who love her.

I am beyond grateful for her. I don’t care that she is different she is perfect the way she is. I wouldn’t change her but if I could take away her struggle I would.

I am ready to dust off and move on. Today we switch hotels and I hope she does okay with the transition. I can feel her tension she knows a change is coming.

This is five

“I am sorry to tell you but we estimate you have 6 months to live”

We sat there in shock looking at each other. This was at a meeting for my mother in law, who had been going testing for months and they finally diagnosed her with pancreas cancer. She was 48 years old. She was a huge presence in Alyssa’s life in all of our lives.

She said no tears

We fought to hold back the tears of course there we were silent ones escaping, rolling down are our cheeks.

As we adjusted to this Information, me and Alyssa’s father decided we would get married. He was the oldest of four children and we wanted her to be able to see at least one of children get married.

I wanted a traditional wedding and we had limited time to plan it. I also wanted my daughter to be a part of it, I didn’t know how realistic this was.

Autism was in full effect. Alyssa didn’t exactly go with the flow. She still has no language and was very set in her way about things, like shoes, a fancy dress and a cute hair do were not likely.

You have to try. If there is any advice I can give it is to try,because you never know until you try.

This was my wedding and I wanted my little girl to be my flower girl.

She had come a long was in these past two years. She was fully potty trained, less aggressive and a little calmer. Although she could turn on a dime and needed structure and routine.

I Paired her up with my niece and on a beautiful October day she put on a dress. ( we made it as simple as we could) with sneakers and her hair in a pony no fancy headbands or curls for her.

She walked side by side with her cousin and her basket of petals and she did it. It was a miracle, or at least felt like one to me.

I knew to be realistic and that it might not happen. I knew she might not be able to handle it. It was okay I was prepared. Her teacher was there and was ready to intervene and help with Alyssa if needed.

She looked so beautiful and was happy. She squealed and clapped as we stood at the alter. It was as if she knew.

This may seem like a typical expectation for a five year old but I can assure you for her it was not.

I was so happy that she was able to participate.

I didn’t want her excluded. To be the only one on the family not there.

My mother in law was the happiest I had ever seen her. She was glowing. We were at the six month mark and she was still going strong. She laughed, she danced with her son,she was radiant.

It was a magical day, not because it was my wedding but because I had had my daughter and my mother in law on this occasion.

In that moment I was so grateful and I realized that autism isn’t the worst thing. Losing someone you love is far worse.

You can very easily become consumed in the day to day struggles, the inconsistencies, and the difficulties autism can bring. It also teaches you to appreciate what you do have in a way I don’t think I would have with out it.

My daughter had her struggles yes, but she is beautiful and healthy. She is vibrant and full of joy and life. She is here to love and hug everyday ( even if she resists)

I look at my son, and realize how lucky I am that everyday things come so easy to him. He is curious and chatty, and full of personality. I know that is not a given as I once thought.

My husband is an amazing father. I am lucky to have married my best friend. He loves all of us with his whole heart.

I have a new baby growing in my belly. A very unexpected surprise. I was just 10 weeks along. I was happy but scared. I don’t know how Alyssa would react. I was worried. At the same time it gave us something, it gave my mother in law something.

Hope. A new baby, a new life.

She was over the moon and you couldn’t help but follow suite.

Five brought a lot of changes. We were able to leave her with my parents while we went on our honeymoon, we went on a family vacation and it was successful.

She wasn’t where I hoped, but there we major wins.

Hope prevails

Autism awareness day 5

Alyssa age 5

autism #autismawareness #autismacceptance #hope

A siblings perspective

A Sibling’s Perspective

I was sitting on the couch after school, my legs criss crossed as I stared out the window lost in thought.

I heard a noise coming from the kitchen and I turn my head and I see my sister getting something from the freezer. I watch her from the corner of my eye as she pulls out a popsicle.

She comes over and sits on the couch across from me. She looks at me and smiles and crosses her legs too.

I can’t help but smile because the simplest things make her so happy. She looks at me with her big green eyes.

I ask her if her pop is good and she nods and laughs, I don’t expect an answer because she doesn’t talk.

I am the youngest of four children. The torch has been passed as my brother says and now the responsibility of watching my sister falls on me.

My sister is older than me by 8 years. She has severe non verbal autism.

She can’t be home alone, someone always has to supervise her.

Sometimes it feels like a lot of responsibility, after all I am only a teenager.

She is mostly easy to take care of but you never know when something can upset her.

Her smiles can turn into blood curdling screams in an instant.

The other day I was setting up a virtual speech appointment for her as my mom was running late, and she got very upset. She was throwing herself on the floor screaming and throwing things.

I try not to lose my patience as it is best to stay calm when she gets like this. It is not easy though. My mom came home and I went in my room and shut the door to drown out the sounds,

Having a sister with a disability has significantly impacted my life. At times it seems so unfair that I didn’t get to have a normal childhood. There are many times we had to leave events early or even simple things like the park when I was having fun. I couldn’t have friends over because her behavior was too unpredictable when I was younger.

When I get frustrated my mom is quick to point out it is harder for her than anyone. She is the one who is unable to communicate. I realize that and I feel bad because I know she can’t help it.

Although my sister is the one with autism, it affects the whole family. We have all had to make sacrifices.

Sometimes I look at her and wonder what life would be like if she didn’t have these struggles. Would she of taught me how to drive, yell at me for stealing her clothes, would she give me advice? What would she be like? I know I can’t dwell on those things.

She has learned and improved so much over the years. I spend a lot more time with her now that I am the one watching her. She loves to bake and do laundry with me so I always let her help.

She tries so hard at everything she does. She has started saying words and she is so proud of herself. Things that are so easy for others take so much work for her. I am so proud of all her successes and I always cheer her on.

Watching her learn something new or being surprised about something she knows is the best feeling.

My sister loves with her whole heart. She is happy and always makes me laugh. She has taught me patience and I can see how strong she is. She inspires me to be a better person, a better sister. I wish her life could be easier, that she could communicate better with us. I will try anything I can to help make her path easier.

I couldn’t be more proud to share my daughter Lexi’s senior essay. She is an amazing sister to Alyssa 💕

More than a caregiver

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.

And remember you are enough

autism #fcvblogsquad #morethanacaregiver #asd

Silent strength

Young love , there’s nothing like it . You live in this bubble of hope. You make plans for the future and wonder about what your life together will bring.

You dream about where you will live , how many children you will have, what vacations you will take. You look forward to a happy life together.

Especially being so young and naive you are not imagining all the heartbreak and loss you will have to go through. It’s a part of life and how you cope and support each other as a couple has as much to do with how you get though these things together as the actual loss itself.

As young couple , we turned into young parents and we were motivated and determined to build a good life. We had a son and then a daughter, and then we bought a house. Things appeared to be going well or so we thought

Our daughter was struggling and wasn’t developing language. She began to disappear before our eyes. She stopped responding to her name and had some different things she would do. You pushed to get her help when the doctor kept wanting to wait. Things began to get more difficult. She would scream and cry for hours and wouldn’t allow you to touch her. You never left her side. She had many behaviors , she would head bang constantly , flop to the floor and you were so patient, so loving to her. It wasn’t always easy.

We were waiting on an appointment for an evaluation. The day finally came and two weeks later we went to get the results. I sat directly in front of the doctor and you sat over to the side observing , quietly , calmly. Then with one word that bubble popped, turning our world upside down. ” Your daughter has autism.” Tears poured down my face and you stared straight ahead, the rest was a blur.

You held me in your arms while I sobbed
You wipe my tears and told me everything would be ok even though your own heart was broken too

You stood strong and tall so you could hold me up when I need to lean on you .

I yelled how unfair it was , how could this be ! And you tried to keep me calm and reassure me.

I didn’t understand for a long time how it was so much easier for you so accept. How you weren’t as sad as me. I didn’t realize that you just as devastated as I was, but was more concerned with being strong for me and our daughter than yourself. You cried alone , you grieved on your own time when no one else was there.

As time went on you never wavered, and we went through some really hard times. You always loved her know matter what.

You and me , we don’t see eye to eye on everything. Actually there’s A LOT we disagree on.

But ,The important things we agree on.
We have agreed our daughter will be loved and cherished, no matter what. She deserves to have the same experiences as everyone else. She will be treated with respect and love , and not left out. We will bring her out with us whenever possible. We will kiss and hug her no matter how hard she squirms and pushes us away. We would do anything to ease her struggle and help her.

It was you who through her in the air and bounced her over and over. It was you who kept trying to get in her world until she let you in, never giving up. It was you who made her feel safe. You were the one who found her when she eloped into the neighborhood full
of woods and a pond. I was so terrified , and you brought my baby back. You were the one on the other side of the phone who took the brunt of my frustrations and tears. You always gave me grace and were my sound of reason.

Well Mostly you gave me grace, after all you aren’t perfect and this life can be really hard. There is lots of frustration, guilt and fear. The early years were difficult but you were willing to try and take her anywhere where I wanted. You would be the carrying her over your shoulder when things didn’t go as planned.

You were the one who knelt by her side when she had her first seizure and rode in the ambulance with her. I was frozen in fear.

You are her hero. She is daddy’s little girl and I don’t need her to say the words to know how much she loves you and fells safe with you. I know because I feel the same way. You have a way of making everything okay, even when your crumbling inside. You never show it. You always make us feel safe.

You love us , put up with our crazy and take care of us.

We have been through some really hard times, there were times I thought this life could break us . We found strength in each other and in our daughter.

We are always able to rally around her , encourage her and believe in her.

We have a beautiful family, four amazing kids and an incredible bond . Best friends underneath it all

Things get hard at times, we argue , yell
and bicker. We get angry and resentful but we always circle back to each other , our children, and especially our daughter. Her needs are significant and she is the ties that binds our family together.

You are the glue that holds me together. You still wipe my tears and let me know it will be okay. I couldn’t of asked for a better father for our daughter, or a husband for me.

You are truly our hero !

My forever Valentine

It seems like a million years , it surely has to a lifetime ago when we first met . 

I was just a teenager but I had lived some life already 

I was babysitting for a mutual friend .A house that was a hangout , a gathering of all the wanderers at different times.  A house you frequented at the same time as me.

You could call it destiny I suppose 

I remember the night perfectly , I was sleeping over because I was babysitting. First we were in the living room chatting , and then we moved to the kitchen. We talked all night long it was as if we knew each other our whole lives. We were still talking when the sun came up and we walked to the store and got hot chocolate . Of course everyone was joking and making comments and we just sat there rolling our eyes but I was secretly smiling inside .

You drove me home and we looked at each other and leaned in for a kiss but I was just a peck , you were trying to respectful or running scared not sure which maybe both . 

Later that night you invited me for the ride to drive your Dad home to the Cape. When we came back from the ride we kissed in the car. 

We went into our friends house and my heart was still skipping a beat. Later , I looked down at your ring and it was turned around with the heart turned in, meaning you were taken. 

1992

I tried not to get too excited.  I had been hurt in the past .  

Going forward we were inseparable. We were either together or on the phone.  Instant best friends , in love and connected . 

You put my heart back together piece by piece.

You saved me in more ways than one . A year and half later we became parents to the most perfect baby boy. We became a family . We loved , we argued , we navigated family drama , we merged as one.

July 1993

There have been so many ups and downs , and there have been hard times , devastating losses , heart breaks , more love and joy than I could of ever imagined in a lifetime .

At the end of the day we have each other’s back Always . 

I Love you more than words could ever say .

October 2001

Success

Success

Success is an interesting concept

We all have different views and different experiences that alter they way we measure it .

My idea of success before autism entered our lives was very different than it is now

Me and my boyfriend , now husband were in love, we had two children a curious , adorable three year old boy and our beautiful baby girl .

We were beginning our lives , he was working and I was in school on the path to becoming a Kindergarten teacher . We were saving and looking to purchase a home for our little family .

I remember thinking how lucky I was . A son and a daughter ,a beautiful life and an amazing partner to share it with . We were motivated and working hard trying to build a life for ourselves and our children .

We had so many plans

So many ideas of “success “

We would buy a big house

Have a big family

Our kids would do it all

Soccer , hockey , dance , plays , cheerleading ~All of it

They would be friends and hang out with each other and their friends would all be hanging at our house . Our son would chase all the boys away . We would have the house all the kids hung out at .

They would have every opportunity and every experience . They would grow up go to college and find careers and have families of their own . I would obviously be babysitting the grandchildren

Autism showed up and most of those plans went out the window . For all of us because it effects every single one of us

Even though my son is nuerotypical he does not get through this unscathed and without loss .

It impacted my daughter the most . The plans for her were turned upside down and inside out . She was diagnosed with Autism and it changed everything. Every dream, every plan , every success

She has autism , sensory processing , anxiety , apraxia and Is non verbal .

She still is my beautiful little girl . I love her with every fiber of my being . Her smile and laughter warm my heart .

In the beginning I was waiting for her to catch up , to talk , to be able to live a typical life . It took time to adjust

I needed to alter my expectations as my reality changed

I now measure success differently, not as a whole but in pieces .

It’s all the steps that come along the way that matter

Success is my daughter dancing on a stage

It is her saying I love you , mama or cookie

It is her making a smooth transition
Or adjusting to something new with ease

It her giving a hug and her squeezing back

It is her laughing and smiling with her siblings

Her being able to wear a mask , dress herself , and find her shoes when asked

To some these are very basic things

Things that are not given a second thought

To us they are everything

When you have a child whose voice you may never hear , who may not understand others , is not expected to engage or function in society

When they have to work twice as hard as anyone else for everything they do

THIS IS SUCCESS !

Yes our dreams and ideas have changed but I couldn’t be prouder of my daughter and how far she has come .

She is a true inspiration

She is a fighter , she has fought for every skill , every word , every connection she has ever made .

She is loved and cherished

She has a pure heart , loves and laughs and is happy

That is what success is

It is only something that can be truly measured from the inside