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

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 nine

Alyssa adjusted well to her an additional sibling. It wasn’t easy with 4 children. The house was loud, chaotic and busy! She didn’t have any regressions or behavioral outbursts and that was huge.

She was thriving and we decided to throw a triple party for all three girls. They were turning 1,3 and 9.
We renting out a roller skating rink and had a private party and it was a blast. We invited Alyssa’s while class and it went so well.

Alyssa was thriving. She was happy. She still had her struggles of course but she seemed to more regulated for longer periods of time.

We went away to Maine for a weekend and that went well too.

She still had not developed language and struggled receptively but she was making a lot of progress. Her classroom was a good fit.

Sleep was still an issue as well but everyday wasn’t a battle anymore.

She loved the water and thrived off sensory related activities.

Lexi wormed her way right inside Alyssa’s bubble. She still did a lot of observing and laughed her sisters at a lot.

Alyssa age 9

This is 8

When Lexi was born, that made two babies in two years. That was a big adjustment for Alyssa.

We were still reeling from the aggression that was triggered when Kierra became mobile. She had just turned two. I will say she working her way into Alyssa’s bubble. She followed her around, showed her things, sat where she sat, this little girl was not taking no for an answer and she was learning to tolerate her. We had lots of pushing down and taking toys but that seemed to finally ease up.

Now a new baby had arrived and I didn’t know what kind of reaction that would trigger. Kierra was consumed with the new baby and basically wanted to be her mother.

Alyssa was more interested this time around. She did a lot of observing, not as much ignoring. She still kept her distance, but warmed up much faster.

She loved to throw away diapers and when Lexi cried she would try to give her the binky. It was very sweet. She was much more engaged with her.

All in all it was a pretty good transition. Alyssa still loved Barney, was obsessed with water and dirt. She still hasn’t developed any language and we working on a picture exchange system that she did well at school with but resisted at home. She could Non verbally communicate very well.

We were very busy and the house was filled with chaos but also with love. She was thriving, behaviors hadn’t increased and she was progressing in many areas. My hands were very full so she has to learn do some stuff on her own.

I think it promoted some independence for her.

This is Alyssa age 8

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 six

We were preparing for a new baby. We had no idea what that meant for Alyssa. I tried to explain and we had no idea what or if she understood.

We knew we had to find away to keep the baby safe. Alyssa had a lot less agressions but the tendencies were still there. She could also flop, kick or scream in a moments notice and could Inadvertently hurt a baby.

Would she be jealous? Annoyed by the cries? Try to hurt the baby? It was so nerve wracking. Alyssa was six when her sister was born. She had calmed considerably, but still needed to be supervised at all times. It was almost if she were still in that toddler stage.

We set up a playpen and put the bouncy chair in it, so there would be no accidental mishaps. Alyssa examined every baby item that came into the house,from binkies to baby chairs. We just allowed it. Whatever would make her more comfortable,and adjust to the baby.

She was queen of the house for a long time and I didn’t think she was ready to share that role anytime soon.

Kierra was born and came tumbling into this world. A beautiful, perfect baby. We were over the moon on love and we would find a way to make it work.

When Kierra was a new born I got up one Saturday morning and Alyssa was up before me which is rare. She covered the kitchen in flour. It was everywhere. Another time she snuck into the
Basement got into a can of paint stepped in it and make bright blue foot prints every where. It was all over the tile floor and there are still very faint smears of blue there.

I couldn’t believe she did that. Was this her acting out? So hard to say. I later realized this was on an episode of teletubbies.

Alyssa completely ignored her sister. She would give her a side glance here and there but barely acknowledged her. We didn’t push it. We would let her do it on her own time. She would watch me change her and feed her but then she would go about her business. It was almost as if she was allowing it but not participating.

She still wasn’t talking,but she was becoming easier to handle. Her behaviors were still there but not as intense or frequent. We were hoping the baby didn’t send her into a regression and so far it hasn’t. She was adjusting well.

She was still sensory driven and fast. She still loved the tub and she was sneaky. No fear or understanding of danger. She was continuing to make progress, and that it was mattered.


Sibling love

As a mom of four I am proud of many things, more trivial things than triumphs

The big accomplishments are great don’t get me wrong but many of these things while exciting at the time fade quickly into the background.

Pride is an interesting emotion. I think in those you love you find pride in the inner beauty and the way their spirit shines through.

I am the most proud of my children. I know their lives haven’t been the easiest. Each of their roles are different.

Growing up in a busy household filled with love and laughter , but with the unpredictable chaos that autism can bring in an instant was not easy. It was Ever changing and they were constantly going through the ups and downs that this life can bring. I know that living this life beside their sister made them stronger and more empathetic people. It doesn’t however come without its struggles, challenges, and trauma.

There was Lots of adversity to overcome at different times. Yet they never hold it against her or resent her for it. They love her always no matter what.. To see them advocate for her and make sure she is included. That makes me proud.

To know that they are loving caring individuals learning to navigate through their lives but never leaving her behind.

To see my daughter get up on a long day after school, swim and dance and get up and make sure Alyssa is fed. To see her come in with a cake pop just to make her sister happy makes me proud.

They are far from perfect and drive me completely bonkers but they are perfect for me.

As parents we are constantly second guessing. I am filled with so much guilt, always feeling like I couldn’t give everyone what they needed, What they deserved, and what I wanted to give them.

This life of parenting a child with a disability pulls you in so many different directions. It is damn near impossible to get it right on all ends. When I look at my kids I see well adjusted happy humans. I know we did something right and I am damn proud of that.

When I look at my husband and how he interacts with our children, and although patience isn’t always a virtue they all look up to him. He makes them all feel safe, secured and loved. I couldn’t be more proud of the father he is.

My Alyssa, my sweet girl, the one who was dealt the tough hand. The one who had to take the road less traveled. The one who has the odds stacked against her.

This girl works so hard everyday to exist in a world that is not easy for her. It is overwhelming and confusing,and hard for her to understand. It places demands that don’t make sense to her.

She has to work for every single word, every single sound she makes. You can see how much effort it takes her. It simultaneously makes my heart ache and burst with pride.

When she hugs me and squeezes me and I feel the love she can’t always express I fill up with pride. That is a barrier that was only recently broken.

This girl wakes up with a smile everyday. She lights up my life with her pure joy. Her laughter fills my heart like nothing else.

I am the most proud of her. Even though there are aspects of her life that are difficult, she perseveres.

She is happy, loving and the sweetest soul you will ever meet.

It’s the simple things in life that I take pride in and mean the most to me.

fcvblogsquad #proud #autism

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 đź’•

Thank you, son

A thank you letter to my son ,

Being an older brother to a sibling with severe autism has not always been easy .
It’s a job you never asked for but you took with stride

At times it was a very difficult and that is putting mildly

Thank you for loving your little sister wholeheartedly

You were her light in the darkest of times
When her life was filled with sensory overload, and nothing made sense to her little body , and she was completely overwhelmed by our world

When she would lash out and hurt you just for saying my name and I would have to send you out of the room for your safety

You never got mad at her and always adored her

Thank you for letting her follow you around and always being there to hug her and tickle her , whatever made her happy

For getting down on the floor with her and playing her way

For connecting with her in any way you could

Thank you for being a loyal big brother and always protecting her when others had no understanding of autism

For loving her and trying to reach her even when she seemed unreachable

For never giving up and for understanding that her brain worked differently and that is wasn’t her fault

How could you understand this at 5 years old ?

I don’t know how but you did

You never stayed mad or blamed her

Thank for being the happiest easiest going little boy when my heart was breaking in to pieces trying to come to grips with a life altering diagnosis

For sitting with early intervention and helping them engage with her

For understanding that we couldn’t go to play dates because her behavior was so unpredictable

For sometimes being disappointed but never taking it out on her

For understanding how much extra care and supervision she needed and never complaining

Thank you for going along with me when I needed that picture , you know the ones where you had to smile for fifteen minutes while I chased her and all but wrestled her down.

Thank you for holding her tight so I could get that picture while she would be trying push you away, kick or roll over you , but you took it instride

You couldn’t have known how much it meant to me to get that picture . I just wanted a picture of my two beautiful children. I needed some kind of normalcy even though it was anything but .

There are a thousand examples or how things went awry, things you lost out on , gave up ,had to leave in the middle of ,

And yes it was disappointing at times but your love for her , your connection never wavered

I tried my hardest to make it up to you
I tried to spend alone time with you , have others take you so you could get a break , bring you places , spoil you . You had every video game and Pokémon card that could be bought .

You nana your grandparents and aunties saw it too and they tried to make it up to you too . I am forever grateful for that as well

But how can you make up for a lost childhood, for having to grow up too fast ?
You can’t

I felt torn in two at times

My love for both of you so strong but her needs surpass yours and there was nothing I could do to change that ,

And then came your sisters two girls, two years apart . A whirlwind you could say

Again you stepped up

Thank you

Thank you for bottle holding , baby loving and all the madness that went along with it

And then things got better a little easier and you got to be a different kind of big Brother

I read about siblings of special
Needs children , they are sometimes referred to as glass children. I thought , That makes sense because you become so strong , but are also fragile

That is not the meaning of a glass child . It means that parents are so consumed with the special needs child . that they look right through you and don’t even see you as if you are a piece of glass

I immediately thought did I do that !?
Did you feel invisible like you didn’t matter ?
I have handled a lot but this I don’t think I can handle . My mama guilt is coming on full force , I already ca so much .

So I came to you and asked you . Looking you right in the eye as I tried to hide the fact that my heart was shattering again even considering this. I asked you to be honest , I needed to know.

You told me that you felt like you missed out on opportunities that you could have had . If it wasn’t for having a sister with special needs that your life would have been different .

I know this to be true , but it still hurt like hell to hear .

But you went on to say that it’s ok and it’s not her fault and it’s not my fault, it’s just what is .

Thank you for that grace

I cry as I type this because it feels like an impossible job to be pulled into all different directions for all these years and feeling that I didn’t get it right . There is no easy answer

But today it doesn’t matter to you, today you just love her for who she is just like always . Today you make time to hug her to make her laugh .

Thank you for that

I know you don’t need thanks or even expect it but you sure deserve it .

I am sorry that I couldn’t always be the mother I wanted to be for you , that I was pulled into the uncharted waters of having a child with a disability and some days I could barely keep my head above water ,

Thank you for being my life raft even though that was not supposed to be your job .

I know this has made you stronger and more compassionate , you are a better person for loving her , for having her in your life

Thank you for being the best big brother she could of ever have

The best son I could asked for and I love you more than you’ll ever know

Love ,

Sibling Spotlight

Sibling spotlight **

The effects of autism impact the whole family not just the individual . Growing up as a sibling to someone who has severe – non verbal autism is not easy . Alyssa has gone through some very difficult phases including aggression towards her siblings .

My daughter Kierra is 18 years old and she just graduated from high school . She has had a lot of sacrifices due to living in the world of autism .

Many she didn’t realize she was making as some are much obvious than others . There are countless sacrifices and losses through the years too many to list some minor and some more difficult .

Kierra is Alyssa’s person . Her presence alone gives her great joy . At times is it has been overwhelming . Countless times of needing hugs and just being near her . When anxious she will seek her out . She has also been the target of her aggression which had thankfully lessened over the years .

There is so much to take into consideration when living with severe autism . Vacations , days out , seemingly minor things can not be done on a whim . Even extra curricular activities can be a challenge ; getting to and from practices , performances anything last minute can be difficult .

This girl has endured it all . Most of the time with a smile on her face . She gives Alyssa so much joy and I am so grateful for that . The extra hugs and attention that mean so much to her ( even if it drives her crazy sometimes she still does it )

Helping to support us by watching her while I am at work or so me and my husband can get a break whether running and errands or grabbing dinner together. I have to say all my kids are amazing and they all help out and more importantly love her , and it’s means the world to me and I know I don’t tell them enough .

It’s part of being a family I say but it’s really so much more than that.

Kierra thank you for all that you do . Thank you for being such an amazing little big sister .
I want you to know I see you and I appreciate it . I am so proud of you. I am sorry for all the things you had to give up and for the simple things that were so difficult because of autism . I am sorry if I couldn’t always be 100 percent present . I do believe this has made you a stronger , compassionate and loving person . This year so much was missed out on due to the pandemic . You handled it well probably because you are used to adapting .

We are so proud of you . Despite all this you are happy, positive and easy going . We appreciate you and love you so much simply
for being you .