How getting an Autism diagnosis is NOT the worst news

I get asked a surprising number of times if I wish my daughters weren’t on the spectrum, is it hard having 2 kids with special needs or was hearing that diagnosis as hard as people imagine it would be?

You know how people say “Let me make a long story short?” This isn’t one of those times because every detail is why I will always have the same unregrettable answer to those questions.

I often tell people Tess saved me and there is more truth than hyperbole to that.

After giving birth to our oldest daughter I had a really tough recovery period. I wasn’t healing very well, struggled with blood clots and was going through a tough time emotionally. I was working full time, going to school for my Psychology degree (man am I beyond glad I finished that) and trying to raise a newborn with complicated in-law issues. When the proverbial sh*t hit the fan all I could think was “Well it must be a Tuesday”.

I had gone to work feeling worse than what even my new normal had come to be with really sharp pains in my abdomen. I was so frustrated with all the complications post c-section I didn’t bother calling my doctor; I was just tired of having her on redial.

I took a break from work to head class and while I was sitting there doing a poor job of pretending to listen to my prof the pain kept getting worse until I felt a sudden warm gush. I must’ve gone into shock mode as I stayed seated until class was over. When I finally stood up I saw a blood pool on my chair and knew I couldn’t ignore this any longer.

Fortunately my husband was also working on a degree at the same university and happened to be in class across campus so I headed over and when he got out asked him to take me to my OB. Unfortunately my beloved doctor wasn’t in so I had to see one of her partners; an old school guy who needed serious work on his bedside manner.

Due to my heart problem (I have Wolff-Parkinson White Syndrome) and history of clots they decided to do an ultrasound because he thought some of the clots had probably just busted and passed. After we finished with the ultrasound tech we waited in the examine room for him to return with the results.

He walks in and tells me I’m on the verge of a miscarriage. I didn’t even know I was pregnant! I hadn’t stopped losing blood since my c-section only a few months prior  (TMI I know) and wasn’t experiencing any of the symptoms I had before with Rose. In that continued “I don’t really care” manner he tells me 3 out of 4 women who come in with my symptoms will miscarry within a week and the fourth would miscarry by the end of the day so he was going to schedule me for a follow-up with my regular OB to see if I would need further medical care’. I was told to go home, rest until the major bleeding and pain stopped or head to the ER if it worsened.

We left and didn’t really talk about this for a week. We didn’t tell ANYONE! At my next appointment I was still pregnant and my OB told me due to my previous issues my chance of miscarriage was still high so she wanted me to come in every week for follow-ups which I did.

Three months later I was still pregnant and we still hadn’t told anyone or really talked about it because we kept expecting the miscarriage. It was like if we didn’t talk about it then my pregnancy wasn’t real so when I miscarried it wouldn’t hurt as much. Things began to get bad enough my OB talked to us about considering an abortion. She said we were going to have to make the decision soon because under Texas law we didn’t have much time left.

I had been pro-choice for a while but after having my other daughter it just felt harder to rely on the idea that whatever was there wasn’t really a baby so it didn’t matter. I know other people will read that and think I’m wrong – I’m not here to convert you I’m just being honest about MY struggles.

We ended up deciding by not deciding. We procrastinated so long legally it was no longer an option. I knew there was a chance we were rolling the dice with my life but I just couldn’t make that choice – or maybe I did.

Finally around the 5 month mark give or take we told people. We kind of had to because I was really not doing well and we needed the support. My heart continued to worsen and the pregnancy wasn’t progressing well. My OB had to guess how far along I was as the baby wasn’t growing properly and because of my previous complications we had no real idea of when I got pregnant. She just used my first appt with her partner as a baseline. Seven months after that first appointment you’d have no idea I was pregnant. I had lost weight during this pregnancy instead of gaining anything.

Tess had to be delivered via c-section roughly around 32 weeks from the day we found out I was pregnant. My heart had started to fail more and she wasn’t doing well either. My OB was concerned if she didn’t deliver neither of us would make it. That nearly came true as my heart stopped after Tess was born. I remember hearing everyone express concern over her then it just goes black.

My next memory, thanks to my wonderful doctor I was able to have one, someone had put Tess on my chest for skin to skin contact. I woke up to her heart beating against mine.

She was barely above 5 pounds and her digestive system wasn’t fully developed when she left the hospital but she was one hell of a fighter. We nearly lost her more times than I care to think about that first year and the only reason we didn’t is because my mom retired from professional nursing to become Tessa’s personal 24hr medical provider.

When she was diagnosed with Autism at age 3 it didn’t even phase me because I was alive and so was she. Trust me there are worse things than an autism diagnosis.

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Autism? Hold my chocolate milk and watch me firework it!

I have this INCREDIBLE daughter who fills my life with beauty and music. She was diagnosed with Autism at age 4 and honestly by then we weren’t very surprised.

Rose started off life doing everything early. She hated crawling and as soon as she had the upper body strength began pulling herself up and trying to move. She was walking by 7 months holding onto furniture. She was talking clear enough that you could understand her and have mini conversations before she was 1 1/2.

Then around age 2 it was like she suddenly forgot everything. She stopped talking clearly even words and sentences she had been saying regularly. She began having more behavior problems such as being angry constantly whereas before she was the calmest and sweetest little girl. She began hitting herself, her baby sister and others out of what seemed like anger and frustration. She would just suddenly start crying and yelling and the only person who could calm her down was my dad.

We tried putting her in daycare thinking being around other kids her age would help as if this could be a social issue. It didn’t, in fact it made it worse. We tried for 2 weeks then gave up because every day I would get a call from the director saying we needed to pick her up because she wouldn’t calm down, she made herself vomit from getting worked up so much, etc.

For 2 years we kept taking her to the pediatrician only to be told she was a ‘drama queen’, there was NOTHING physically or psychologically wrong to explain the behavior, language and social skill decline.

My parents finally got fed up and found a specialist they wanted us to take her too so we could first rule out any biological explanations for her behavior. Looking back I feel horrible as her mother I didn’t do something sooner but I kept thinking this is a doctor and he knows more than me so why should I question him?

The specialist discovered she had been suffering from untreated ear infections for such a long time her ears were full of scar tissue and she needed immediate surgery or she’d become permanently deaf. There are just NO words to describe how I felt hearing that all those times she had been screaming, banging her head, crying – she was in excruciating pain from the inside of her ears being slowly destroyed by infection and she hadn’t been able to tell us.

The horror over this turned into anger from 2 years worth of doctor visits where I had been blown off as a hypochondriac mother and at the last visit the insinuation was made that CPS needed to talk to me about the proper use of a doctor’s time making me feel like I had been threatened if we brought her again “for no reason”.

She spent her 4th birthday having surgery and recovering which was thankfully successful and restored her hearing so well she is actually a little sensitive to loud noise.

Although her behavior changed in a positive way post-op it was very obvious she wasn’t hitting the psychological development milestones she should so our next step was to have her tested by a psychologist. A few months later the verdict came in – Autism. She was immediately enrolled in a program specializing for kids with special needs who are too young for Kindergarten.

We had the most amazing teachers and staff at the school and I give them TREMENDOUS credit for helping Rose find her way. I was shattered when she aged out of their care because once the school tried to put her into Gen Ed but without the resources she had through her previous staff Rose began to backslide a great deal. Some of it was because she felt unwanted and like she was a bad person. We got so many notices over her ‘bad behavior’ in the classroom I could’ve wallpapered my living room. Instead of examining her actions through the lens of Autism and taking into account she wasn’t understanding the social rules she kept getting brushed off as being a problem kid.

We left that school and the support network of friends to move to a new school where she has become the firework I knew she could be if given half a chance. She returned to being that bright happy kid she was before they moved her away from the staff who made her feel loved and welcome.

Now at 8 yrs old Rose LOVES music; Katy Perry and Adele are her favorites. She can hear practically any song and sing it from memory with perfect pitch. I feel like I have my own Live version of iTunes when she’s home 🙂

Einstein is her go to guy to read about. She has a ceiling to floor poster of him and one of his quotes on her bathroom door. She is a huge fan of science and math, so much so that during her summer break she was constantly doing math problems and having her grandmother and I design science experiments.

She loves drawing as well. She often will watch videos on YouTube then pause them so she can draw a scene she likes by looking at the TV then recreating it on paper.

To help with her self-confidence we enrolled her in a Fine Arts Camp this past summer where at the end she had to be part of a public show. First time ever I got to see my daughter up on a stage participating in something.

She has made me a better mother. I fight for her everyday now instead of letting others dictate her life. Due to her intelligence level, which is higher than people have a tendency to give her credit for due to the Autism, I treat her more like a mini-adult than a kid which has given us a fantastic relationship. I do my best to ensure she feels loved everyday and wanted for just who she is.

She’s my firework who lights up my life with beauty and wonder everyday; I can’t wait to see what she’ll do when she explodes into the world.

 

Crazy woman but really adorable kids