u/Creative_Spirit_0220

This is more of a vent than anything. I need help. I can’t do this. I can do this, I WILL do this, but I can’t do this.

I don’t know if anyone has seen my previous posts but I have so much trouble connecting with others. I can’t make friends. I try so hard and it doesn’t work out. The only person I kind of have to support me is my husband, but that is what this post is about.

He’s military and works 80+hours per week. We make little money, and we’re far away from family because of whatever orders they decide to give us. Because of our level 3 kid my job opportunities are limited at best. I am a historian. I can’t find any work anywhere because my child’s schedule comes first, and there is no one who can help me with her. I had hopes and dreams that I gave up for this family. I am always home doing my best for our girl by myself. I spend all of my time researching and working with her and advocating. All of my life is dedicated to this child.

My husband not so much. Almost all of his time and energy is spent at work. I went to the ER a couple weeks ago because I passed out from exhaustion and he got three days of emergency leave. When I had a surgery for my ectopic a few months ago he got one day to care for me. I didn’t even have time to grieve because my daughter needs me. I am so alone. All the time. It doesn’t matter that I get an average of 3-4 hours of sleep per night from waking up for my daughter every time she has violent night terrors. It doesn’t matter how beat down and tired and dead inside I am. I am always there for my girl and I always will be.

Today I found out he goes to NTC soon (another whole month of training out of state) and I think that’s the straw that broke the camel’s back. He has been to the field 6 times this year already. He has gone on three 9 month deployments in the last 4 years. What am I going to do? How does anyone do this alone? I’m so grateful for housing and tricare, but how far can that gratitude extend? I’m so, so tired.

I hate him. I love him. I hate him. I know it’s not his fault but this is our child we adopted together, so how is it fair that I spend my life caring for her and he gets to have his career? I would trade places with him in a heartbeat. I miss my job in academia. I miss research and writing articles and teaching. But when I look at my non-verbal, high-needs kid I understand there are things in this life more important than that. Why can’t he?

What do I do? Will this ever get better? Please, please help.

She was diagnosed level 3 with CAS about a month before her fourth birthday. The diagnosing physician knew right away she would leave with a diagnosis, but what baffled us was her range in scoring.

Communication was extremely low (non-verbal at the time, now she has a few signs and a handful of words). Social skills very low. At the time, the Repetitive and restrictive behaviors were pretty severe as well. Her fine motor skills were moderately low as well. Those areas are what got her the level 3.

However, all of the other parts were considered normal or moderate. Even back then, she had high motivation and a desire to connect and please others. She had normal awareness, cognition, and social affect. She also learns extremely well in the right environment.

I will say, every year we have had her her condition has improved tremendously. Is that her healing? Or is it simply a child growing up?

We had to get another diagnosis a year or so later for her for ECHO or EFMP I believe, something like that. The doctor there was the first to say he didn’t know that it was actually autism because so many of her traits don’t align (of course we’re acknowledging it is a very broad spectrum, but there was so little consistency). He still gave us the diagnosis of course because she is at the end of the day high support needs, but let us know he was doing it so we would have access to resources she wouldn’t get if he was unable to label it.

At my kids IEP meeting last week, the LCSW, ST, OT and resource teacher said almost the same thing. They and the second diagnosing physician believe her behavior and communication problems are more consistent with children who have experienced extreme neglect/abuse.

We took her in at about 2 years old and it took a very long time to get guardianship and services set up(and eventually adoption). She did come from extreme neglect. I don’t know all the details but i know she was left alone in an empty room 16-20 hours a day from 0-2 years only being interacted with for feeding. Changed maybe once or twice a day. When she was fed as an infant, she would be laid down with the bottle propped on a pillow. Rarely held. Never talked to. She was also premature and for the month she was in the NICU she was not visited. There are a lot of harmful things that happened.

Anyway, I feel strangely optimistic. I hate the man who did these things to my beautiful girl (in prison now thankfully), but it does give me hope that one day she may develop communication skills or some functionality.

Could this be autism made severe by this extreme neglect? Or could it just be the effect of the neglect causing these symptoms?

(She is my brother’s biological daughter, neither him nor his girlfriend have any profound autism or cognitive disability in our families. My brother and I believe we could have level 1 ASD, but no official diagnoses ****HE WAS NOT THE ONE THAT NEGLECTED HER. She was given up for adoption to a man who was an army friend of his who couldn’t have children of his own. As soon as we were made aware of the situation I took her)