Dance recital

Today my girl struggled hard. Autism and Anxiety did a number on her.

It was dance recital day and that brought a lot of changes and too many transitions for someone who was out of sorts

I was heartbroken watching her struggle

I felt unsure if I was doing the right things for the right reasons

I was angry at autism for making things so hard

I was frustrated that even in a group of others with special needs she stands out,and then I was mad at myself for caring.

She was the only one who wouldn’t wear the shirt.

She was yelling in the audience and she had attended enough dance recitals to know how to act.

I didn’t give up though. I thought about it and I considered leaving but I knew in my heart once she was with her class and her teachers she would be okay.

We had to work through the hard to get her to the otherside . It took Lots of reassurance and patience.

It was worth every second once I saw her step on stage. She danced and as the dance continued she got more confident. She had the biggest smile
at the end.

She came back in the audience and watched the show. She met back up with her class and wanted to wear the finale shirt. She went on stage with the whole school and danced the finale dance and was
so happy!

It was unbelievable! Autism threaded it’s way all the way through and in the end presented us with such a gift. It is so magical watching your children perform. To know how much she had to overcome to get there makes it that much sweeter.

autism

Photos

Photos

I have always love photos. You could say I was obsessed with them. Every since I can remember, I loved looking at photos. I remained taking photos and bringing them to get developed and having to wait to see them. I hour photo was like a dream come true.

When I had kids, I couldn’t wait to take pictures and get professional pictures taken. I envisioned a house full of pictures. I did in fact take lots of pictures. We also got pictures of the kids taken. My son’s every three months, the first child. When Alyssa came I took lots of photos of her too but slowed down a little with the professional ones.

Pictures became a little difficult when Alyssa stopped making eye contact. It became very difficult for her to stay still enough for a photo. Professional pictures became too stressful. Our last professional successful ones were around three. We tried a few times after that,but she just couldn’t do it.

Over time she became resistant to all pictures. It became such a struggle and she became so upset I stopped forcing it. I have gaps in time where there is no pictures of her, holidays were there are only one or two pictures. It makes me sad when I look back, but I know that it was for her benefit.

I don’t have a professional picture of my children together or a family one. It’s something that matters to me and we will work to make it happen.

It wasn’t until I created this page that she would even allow me to video. Although it’s funny because she loves to look at pictures and watch videos. She has always loved pictures. The more I started taking pictures the more she seemed to adapt. Now she will even stop and post for me!

Pictures are still a struggle for her. The eye contact, looking at the camera and smiling on command are complicated for her. The difference is she will try. She is a willing participant. The pictures aren’t always picture perfect because it’s hard for her. I am
Happy she is included and trying.

This weekend her sister got professional prom pictures. We had a few taken with her. She got a few by herself. It wasn’t ideal, it was very hot and she was anxious. She tried, and cooperated and I am so proud of her for that.

Medication glitch

Non verbal, Non speaking, unable to advocate for yourself, it makes you extra vulnerable. There are so many layers to parenting a child with autism. Having a child who is non verbal and has substantial difficulties communicating adds another layer to navigate.

I don’t think many outside of our world can understand the constant battle, and how profoundly it affects every aspect of our life,and even more so our Child’s life.

The lack of understanding on how different this looks from one individual or another, puts us on a repetitive loop of explaining our child’s situation. It is frustrating as you can imagine. I am not referring to the older women at the park,or to the young mom
who had never encountered someone who is non verbal.

I am referring to the very institutions intended to help us. Case managers , doctors, insurance workers, the list is never ending.

It is a constant balance of advocating and accepting. It is such a big job when you are your child’s voice,It is exhausting. When everything falls on you, the decisions, the guilt,the energy to push,the sheer exhaustion from never getting it all down.

This life affects your mental health. It takes a hit. It affects your ability to stay on task, to remember to make the phone calls,the appointments ( and go to them),to keep
moving ahead no matter what.

It’s leads to feeling inadequate at times. You have this enormous responsibility to be your child’s voice, to fight, to advocate. Of course you love your child and would do anything to help them, it just feels at times that it is an uphill battle. It feels like a lot to take on with such little support and understanding.

It’s just such a complicated layer to navigate and to explain.

Alyssa ran out of her medication, partly due to me but partly a glitch with the insurance. A medicine used to treat seizures, that she had been on a long time. All happening on a Friday. I had to call so many people. I was literally on two phones at once. It took hours to navigate and lots of tears.

It would be dangerous for anyone to go off this medicine abruptly,but someone who can not communicate, or explain anything going on with their body is even more problematic. It put me in a panic just to think about it.

When I called masshealth to try expedite it,they informed me they could only speak to her. I told them she doesn’t speak and we are her guardians,she said it doesn’t matter she only talk to her. I was irate as I know this is not correct,but sometimes you hit a wall.

At this very moment I felt the weight of the world. The fear that comes along with being responsible for someone who can’t communicate and how truly vulnerable that makes her.

Of course I was not giving up,nor will I ever. Realizing that it was a three day weekend and that added an extra day without medicine put me into a tailspin.

TIme was ticking and I could almost hear it as the 4 O’clock hour was passing by and we all know how everything shuts down at five on a Friday. it was able to get it temporarily resolved at the last minute.

I will always fight for her as she deserves nothing less. #autism #advocate #nonverbal #nonspeaking

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

Five things you I want you to know about autism

Five things you I want you to know about autism

Please don’t tell me you are sorry if I tell you my daughter had autism , I interpret that as you are sorry for my daughter. Yes I grieved as her mother that is my right not yours. I want you to celebrate my daughter I am proud of her and adore her. If I confide in you a difficult situation or struggle she is having, then it ok to say sorry but never for her.

We do not live a sad life. It is at times a hard life, I won’t deny that. We have lots of trials and tribulations just like everyone else. Our life is just different. We celebrate every accomplishment. We laugh and love and are grateful for every success.

Autism affects the whole family. The siblings endure a lot. Try to include them when you can. It encompasses us all and we try very hard as parents to give everyone what they need but sometimes it is an impossible task. The siblings are the true unsung heroes in this life.

Autism is perplexing and mysterious. It does not discriminate. It is nothing we did or didn’t do. It does not come from over use of a tablet, autism was around long before iPads existed. It doesn’t always make sense, even to us. Please don’t make comments on your theories about our parenting , we carry enough guilt ourselves. Believe me no one could scrutinize or judge us harder then we already do to ourselves.

Autism is a spectrum , and yes they can be labeled mild, moderate, or severe , but it’s not linear. It looks different for everyone. Each individual has their own
Struggles, strengths and experiences. It is an invisible disability and you can’t always see the whole picture. Yes of course there are similarities but there are way more differences. Do not presume to know our journey because you know someone else with autism.

As we walk into autism awareness month , I do it with pride. I am more than happy to talk about our differences. I want the world to understand our journey. Compassion and kindness go a long long way in this complicated , beautiful, and colorful life.

Autism mornings

Someday are just tougher than others ! Mornings are by far the most difficult transition for Alyssa. Somedays she screams the whole time fighting me every step of the way , and others she is happy and cooperative . Most times it’s actually a cross between the two .


She can get set off by multiple things or be perfectly fine . Today is swim day which she loves . What she doesn’t love is anything different being put into her bag .


I have to send a swimsuit and a towel which she just hates. I try to sneak it as much a possible but she has her spidey sense and you can’t get much by her . It’s so sad because she has this internal struggle where she knows she needs the bathing suit and towel but doesn’t want it in her bag . She can be so rigid and this is one of the things she is most rigid about . It’s so hard to get through to her when she’s like this . She’s throwing everything storming around screaming . The van of course is minutes from arriving . I bought her a cute little draw string bag with fish on it , thinking that would help . I tried giving that bag separate and she entertained that for a minute lol . She finally relented .

My phone then rings and I guess I didn’t here the van beep ~ I wonder why .
The van ….. Now for some reason they just switched her driver who she has had all year . He is an older guy and he is so nice . He is so sweet and patient , and he loves Alyssa . Well today was a different vehicle and different driver from yesterday . Kinda sort of complaining to me because he was there for ten minutes . Guy you have no idea what I’ve just been dealing with. He goes on to say how don’t worry she’s with the same kids . Well there was a boy on her route who is high functioning ( not sure if he as autism or not ) he always looks out for her. If it’s a sub driver he will tell them her routine , it’s so cute. He is not on the route he is on another route. So it’s not all the same kids .

I now come in the house upset . I know it’s fine and stupid to be upset about . I am fighting tears . I call my husband big mistake ~ now the tears come . He can’t even understand me . He’s like what’s wrong and I’m all like I want her driver back and he says that’s why your crying ?? Yes you ass that’s why I’m crying . I know it’s irrational its just hard sometimes . It’s like as far as you come and she is doing so amazing and I am so grateful, but it’s still just a lot sometimes .
I am being ridiculous I know .
It’s just the last thing to push me over the edge .

somedaysareharderthanothers

autismmornings

dontcry

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.

autism

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