The struggle

Today I am feeling the struggle. What I refer to as the hard. Autism is hard. It’s hard for my daughter, it’s hard for me as a mother,it’s hard at times for the family as a whole.

I try on my page to share the joys, the triumphs, the love.

I know what it’s like to live in the hard every single day, and I want to give hope.

I remember the heartache, the pain, the frustration I felt all the time.

I remember feeling like I wouldn’t make it through the day,or the week but I always did

Sometimes we would have good moments and we appreciated them, other times we would have a good day and we would just go with it because it would be fleeting.

As time passed it turned to good days and boy we treasured those. We were suited up everyday ready for battle because we were in battle mode. I mean there were days that our armour cracked because it is so hard to see your child struggle,but we dusted off and were back to it.

Eventually things took turn and we had good weeks, although once a hard day came back it was here to stay. It is so interesting the way autism works, no warning no trigger it just cycled back and forth. We even got to a place where the easier times lasted months at a time, but once they turned they were done.

It’s not to say we didn’t have good and bad days in between of course we did but overall this is the way it went. It was always like this.

Somehow it turned and slowly the easier times lasted longer than the hard times. There were exceptions to this when big changes came but it was the general flow.

Now we have gotten to a place where the easier times have trumped the hard. The script somehow flipped. We have bad days of course, sometimes even a bad week. We mostly have hard moments on a good day and can move on from them easily. I don’t when this shift happened it just kind of slowly evolved over time. We honestly even have days that are all good with no hard moments.

Let me be clear, we make lots of small accommodations to keep her happy. Sometimes big ones it is a joint effort.

I am so grateful for this mostly for the ease it has brought to her life.

She of course still has struggles. Sleep is a huge issue, her need for control, and of course her anxiety.

When she gets triggered it can be very challenging

The thing is I am not prepared for battle anymore

When difficult times reappear when autism and anxiety come together and cause a ruckus I am left frustrated and emotional.

I go right back to that day she was diagnosed,and to the day I realized this was forever, the emotions come back so fast. It’s feels like all this progress is slipping away before my eyes and I am right back at ground zero.

My daughter is struggling. Her anxiety is spiking and I don’t know why. She can’t tell me. I see it im so many little ways

Yesterday she was triggered because she didn’t want to do virtual speech

She had such a bad meltdown. She broke things, smashed a glass, threw a chair, hurt herself which is the worst for me.

She was out of control which almost never happens anymore.

This morning she struggled. I can see the anxiety and it is making the rigidity worse.

She is limbo with no way to communicate her feelings

It makes me feel like a failure as a mom to not be able to help her. I am reminded of how much of a struggle autism brings to her life.

I know we are not supposed to say it but autism sucks sometimes, it really does.

I have a love-hate relationship with it. Of course I love my daughter every part of her and that includes her autism. I hate the grip it has on her and especially with anxiety as it’s co-pilot.

It breaks my heart to see her struggle to know it’s there and feel powerless to fix it. She told me she felt sick, and I think she has a massive meltdown hangover. She kept putting her hand on her head. I think she is hot because she is anxious. I know that level of anxiety.

I want you to know it’s ok to be sad. It’s okay to say that autism is hard. It is hard for your child, for you and your family.

When you see the beauty and joy it is easier to embrace autism. It’s always there but sometimes you have to look harder.

When you are watching your child struggle it is a lot harder to embrace it.

It physically hurts me to see my girl sad.

You feel it, process it and move on.

Please know you are not alone.

I cried a lot today. And that’s my truth.

Tomorrow will be a better day.