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.

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.



When it comes to autism I swear everything is upside down. That’s the nature of it I suppose.

Things come full circle, they go backwards, you see progress followed by regression.

Things that should make you happy can stab your heart and things that others see as heartbreaking you see as a day in life.

We have finally decided to try medicine for sleep, it didn’t work and made her miserable. Her happiness is not a trade off I’m willing to make. She is back to her self and you can see the difference just by looking at her. She was beginning to go dark and if you know, you know.

If so nice to have her back, to see the relaxed look in her eyes. Don’t get me wrong there is plenty of struggle that goes on, Bad days and hard moments. Autism likes to keep you on your toes.

Generally she is happy, content, her smile is so genuine. Her hugs are back I didn’t even realize they were gone until I got one again.

I checked on her last night. I had her take a sip of water before I went to bed. I peeked at her iPad. She was smiling and laughing, she was watching Barney clips. All these years later and it still brings her joy.

I couldn’t help but smile. Some may find it sad but I don’t. I love how happy it makes her. Her happiness is the most important thing to me.

Autism is confusing, if I didn’t live this life I wouldn’t understand.

There are so many things about autism that take my breath away and some physically hurt my heart.

It’s changed and evolved over the years that’s for sure.

If something makes her happy then I am perfectly fine with it.

choosehope #autism #autismlove


In honor of mental health awareness

I started writing this on Christmas Eve and never finished it . It is more vulnerable and raw then what I normally post but it’s important to talk about it

At times I feel disconnected

Disconnected from family

Disconnected from my husband , my own children

I love them of course but sometimes it feels if life is just moving around you it you are staying still

It’s Christmas Eve and I want to feel happy but I don’t

My tree is finally up and decorated but I don’t feel the joy I usually feel

I feel tired, just mentally exhausted

The days go by so fast , and I feel myself wanting to grab a hold and enjoy one , but I can’t

I have times where it lifts and I come out and play for a short time , but then I retreat back

You can’t see it , you can’t hear it , you wouldn’t know it if you were around me

I feel guilty for these feelings as I have so much to be grateful for

When everyone is cheerful and happy and everywhere you look , there are picture perfect families.

When you can’t shake the feeling no matter how hard you try

Depression is real and it’s dark

It’s not about being sad or crying into your pillow

It is about not being able to feel

Feeling like you are under a dark cloud that you can’t get out from

It’s going through the motions

Life is tough sometimes

Marriage , kids ,,teenagers , autism, finances , work , balancing it all , a pandemic is just the cherry on top . It can all be very overwhelming

And this on top of it makes you feel like you suffocating

To cry would be a relief because you would feel

It’s no ones fault , it just is

You can’t just “cheer up “ or “snap out of it “ thank you for the suggestion though

I live with anxiety ,not just any anxiety

Generalized anxiety , panic disorder , and ptsd and it is horrible at times but I silent pray for it because at least I can feel

You have to to find a way to put one foot in front of the other , to just put your head up

It’s okay to feel this way , but don’t let the tears silently fall by yourself

Let someone or something help

Pick up the phone and talk to someone

Say it out loud

Even though you just want to isolate

Depression does not make you weak , it takes so much strength to fight it

To go through the motions

To push through and even the times you can’t

And sometimes you need help

It might be in the form of medication , or a therapist , it could be a loved one or a friend ,

But talk about it , talk to someone do not carry it alone

Even though it’s so hard to reach out

It will help

It’s okay to not be okay

As a special needs mom there is a huge responsibility on you to be ok , to be strong , to fight , to live forever

But sometimes you have to take care of you; as hard as that is , you have to take a breath and help yourself




Trip to the dentist

Three years ago I attempted to bring Alyssa to the dentist … it didn’t work out . We showed her videos and pictures . Her speech therapist made a social story . We talked about it repeatedly . She screamed the whole time and they could barely look in her mouth . The only way they could do a cleaning and any other possible dental work she may need would be to book an OR room at fransicans children’s hospital put her under anesthesia. For a cleaning ? I reluctantly agreed . I know it sounds drastic but in order to blood work or even a shot she needs to be sedated . We booked the date and she ended up having a cold so I canceled the appointment and never rescheduled . I know this is something people do but it gives me so much anxiety .

I attempted to bring her again this year . I talked about , showed pictures all that stuff to help prepare her . I’m the car she was ok just saying ahh and opening her mouth . As soon as we pulled into the parking lot she started whining and protesting . In the waiting was full out crying and screaming . The dentist looked at her and said I’m sorry I think we are going to go the OR route . We brought her back to the exam room she was screaming and crying everyone staring at us ( nothing new ) We tried to calm her down and the dentist told her she just wanted to look . Alyssa calmed a bit and let her look.

Although anytime any moved at all she would start yelling and look to escape . It’s like she wanted to listen and do what we were asking but a part of her was afraid and couldn’t . The dentist and her assistant were so patient with her constantly reassuring her and coaxing her . It took a lot of coaxing and waiting but they were able to do the cleaning , however it had to be on her terms . She had to have a mirror so she could see what was happening . Part of the cleaning was done with her standing up .

Everything they did they showed her and let her touch first . Once she didn’t feel threatened they were able to get her her to sit in the chair . Kind of , she would only sit straight up she needed to know she could get out if need be

. Any time the dentist even moved she got upset , she was waiting for the other shoe to drop . The dentist got it . She understood she had to make her feel safe . I can not believe she was able to tolerate .

She did so good and we were so proud and made a big deal . I took lots of pictures and videos so she can look at them and watch them . This was a huge accomplishment for her !