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.

Learning Challenges

Learning is very challenging for Alyssa. There was not a lot of focus on academics in her earlier years. She was completely non verbal, had zero safety awareness,had behaviors and sensory avoidance and seeking behaviors.

Their was more focus on helping her to communicate, stay safe and getting her to attend to activities.

She didn’t tend to retain a lot of information.

At one time I was told their was no point in teaching her the alphabet. At the time I understood, there was so many other things that were more of a priority.

Now I second guess that decision.

I was told it would be too much information that would be useless to her because she couldn’t process it.

You see I was told she would never speak

She would never understand spoken word.

Does she struggle immensely in this area to this day?

Yes she does, there is no denying that.

I do know she can understand more than I ever imagined. I know she makes connections I wouldn’t of thought possible.

I Thought the only place I would ever hear her voice was my dreams. For so long that remained true and now she speaks.

I know she can recognize words, she can copy and match letters, she knows what many words begin with. I know there is a lot in there that she understands some things I am not aware of.

I was told she would Plateau by a certain age and she would stop learning most likely by age 12.

That she would not be able to follow directions especially more than one step unless she had a visual aide.

She could not comprehend abstract things that she could not see, And yes today that is not her stong suite.

Things like pretend play would just not be possible
for her.

I tried to be realistic. I understood but I’m my heart I didn’t believe. I don’t know if that was mothers intuition or wishful thinking.

My daughter is a visual learner. She is still
Learning and gaining and she is in her twenties.

She is a life long learner.

You have to believe in your child and believe in the power of yet.

No one can see the future.

I don’t know if my daughter would of learned more if she were introduced to more. Maybe‚ĶMaybe not

I know she can pretend play. She understands a lot. She works so hard everyday.

She doesn’t learn in the typical way but she has learned far more than anyone predicted. It is still a push and pull, I try my best to work with her and teach her. Sometimes it’s successful others not.

She is so smart just had a hard time showing what she knows.

I will never give up. I will try to reach her and help her learn as much as I can.

She is worthy of it and she deserves it.

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.

Pool day

Yesterday was a confusing day for Alyssa. It rained all day and we left the pool hoping the storm would pass but didn’t go back to our place ( it’s 10 minutes away) so she stayed in her bathing suit.

Thankfully the pool opened back up and we drove back there to swim. We only had an hour but decided to make the best of it.

She was so happy. Just like that everything was right as rain in her world. Expectations changing is so hard for her.

We wasted no time and headed right for the water slide. He sister took up and she had an ear to ear grin. Since it was a rainy day it was not that crowded. She went in a tube and we floated around the lazy river. We turned around and saw a rainbow and I swear it there just for her.

She was so happy. She was back and it filled my heart up. So much of this life is hard and so much goes wrong despite our best efforts. When it goes right there is nothing like the joy and love you feel. I consider this one autism’s biggest blessings.

We had just enough time to soak in the hot tub before we had to leave.

And nothing tops off the night better than a trip to dipping dots. We all know this girl loves ice cream.

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.

Magic of vacationing

Going on a vacation can be so chaotic. So many transitions and changes which are stressful for everyone, but very overwhelming for Alyssa.

Now that we are here my girl is thriving. She is happy,content and sleeping. It’s like she was made for this life.

We are staying and Disney and it’s nice but it’s just two queen beds to a room so it’s small. We have 2 rooms that are connecting so everyone has their own bed.

She loves the water. She is so happy here. It makes my heart want to burst. Their is so much in this life that is hard, and there is so much that goes wrong. So many plans that go awry and things she simply can not not handle. It so so nice when that isn’t the way.

Don’t get me wrong autism can worm it’s way into any situation at anytime and we are well aware.

Yesterday we went to two parks. It was very hot. When I say hot I would compare it to the gates of hell. The humidity was almost unbearable. We must of walked 10 miles.

Animal Kingdom

She was a rock star. She loves the rides! She was such a trooper. She was the only one not complaining. I thought she would get upset when we went to the second park. It’s a lot of walking.

When you go to Magic Kingdom, you walk to a tram, then take a monarail and then walk up to the entrance before you even get in. She didn’t miss a beat. Also in years past we had to fight her to get a wristband on her, once I pulled out the magic band she extended her arm. She did awesome there too. Even cooperated with pictures.

She amazes me.

This our 7th trip to Florida going to parks. The first trip she was 5 years old. She has come a long way since then. The repetition helps her so much.

Don’t give up. Even if this is something that is out of the realm of possibility now,it doesn’t mean it will always be.

Road trip 23

Day four and road tripping is over!

Last night we decided to stop in Jacksonville to rest and get dinner and then we do the last 2 hours in the morning.

Everything goes well until it doesn’t. Over all she did amazing. These are long days in the car with lots of transitions.

And when autism strikes it strikes.

We pulled in the parking lot for dinner which happened to be the same parking lot as the hotel.

Once she seen the hotel she started yelling. We pulled into the restaurant side and she couldn’t settle.

We tried to leave the restaurant but that was making her more upset. We were in the hallway and she was crying and screaming and everyone was staring. I don’t blame them but it’s so irritating.

I saw the manager keep looking out the door. A waitress came out and asked if she could do anything to help. Which there wasn’t. We were able to finally calm her down and have dinner. However when we left and pulled around to the hotel she was not happy.

She was screaming at the top of her lungs which got worse as we went. Everyone was done we had been driving since 9AM. Patience had left the building.

She was completely disregulated.

It’s so hard because she doesn’t get it. I tried to explain one more day and then we will be there. We never stop three times. She knows the routine. On top of it she is completely exhausted. She eventually calmed down and fell asleep.

Today we finished the last leg of our drive. We are at the Disney Resort and this is more her style.

All is right in her world. She is swimming and in her happy place

Dance anxiety

Today was a really rough day. It was overruled by anxiety and autism, and communication difficulties.

The anxiety spikes and everything else rises with it.

Today is a special day. It’s Alyssa’s dance recital. If you asked me 5 years ago if I thought that she would be able to tolerate a dance class let alone participate in a recital it would of been a hard no.

She does so well at her dance class. She loves it. We talked about and prepared her for the show. She is very familiar with recitals as she has watched her sisters dance for years.

She was up most of the night, so it was rocky from the start. Lots of yelling, some chair throwing, she was getting stuck on everything. She was crying and I couldn’t get her to sit to brush her hair. She was escalating by the second. She had a hangnail that is a little red and she couldn’t move forward from that.

It’s getting later and I had already bribed her with Dunkin’ Donuts, which means we have to stop.

I wanted to get there earlier but that was out the window. She has no concept of being late or rushed. If you lose your patience or have a tone she doesn’t like she will retreat further. I was getting so frustrated.

I could feel the tears coming. It’s so unfair that it has to be this hard for something she enjoys. There are times that I don’t even give autism a second though. Many times I forget. Then there are the times where it’s glaringly obvious, today is one of those days. The pain comes rushing through as I am faced with how hard she struggles with the simplest things. I can only think of how unfair it is, as the tears start to fall. I am trying so hard to keep it together but they don’t stop.

I was finally able to get her hair in a pony and brushed. She needed ointment on her finger and a Bandaid, they she will only tolerate for a very short time if at all. We got her out of the house and into the car. She was trying to calm down but couldn’t regulate. My teenage daughter was coming with me to help. She has ADHD and is bothered by the sounds. She is getting annoyed with Alyssa as she is still making lots of noise.

I can’t help getting upset as tears start to fall again and I am getting irritated with her lack of compassion for her sister in the moment. Then I feel guilty that I put so much on her,and I start crying more. I Know it’s a lot. I can barely pull myself together to order the food,which they have none of what we were ordering. Some days it’s like everything is working against you.

Then I question why am I doing this. Why am I putting her and us through this. Is it for her or me? Am I doing this for the right reasons.

I want her to have every experience she can. She works so hard and tries so hard. She deserves this. I know we have to walk through the hard to experience the good. The anxiety just makes it that much harder. She did not do well inside and I began to doubt if she would be performing.

She is just so confused at this point. My only hope
Is that when she sees her teacher and friends that she will snap out of it and cooperate.

It shouldn’t be this hard but sometimes it just is.

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

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