From the beginning...

I was 20 when I had my first daughter. She came into this world three weeks before her due date, on Wednesday September 12, 2007. And she was mine, all mine. I wasn't allowed to drink legally, yet they handed me this brand new baby and let me walk out of that hospital with her. What a walk it has been.

Her father and I split up when she was a week old and multiple other times throughout her first year of life. We tried but there were far too many issues from the start. He and I were never meant to be any more than a fling but we tried to make it work. I saw the warning signs early on and was even issued a warning from his parents, there were things about him that I needed to be aware of. I just didn’t know how important they would be and how much they would shape my life. See, he was diagnosed with ADHD, generalized anxiety disorder and Oppositional Defiant Disorder at a young age. After a suicide attempt and a two week stay in UCLA’s mental health facility, the name Asperger’s Syndrome was thrown around. At the time, there wasn’t as much information as there is now, so his parent’s didn’t follow through with getting an evaluation for a proper diagnosis. Remember this, it will matter later. On top of those things, he had a lot of anger issues. And, that just didn’t make it the safest or healthiest relationship. We split for good when she was 19 months old and have had very little contact since.

Back to the girl though. She came into this world on her own time, in her own way and we have been doing things that way since then. She was an easy baby. She did her own thing. She didn’t cry much. If she did, she was hungry. She didn’t mind sitting in a wet diaper, she didn’t mind being left to explore on her own, she didn’t mind much. She started to crawl at 5 months and was walking by 8 months. She was full of smiles, loved strangers and made good eye contact. We didn’t think there was anything to worry about until she was about 18 months. She did not communicate. She could say a few words, but not as many as she should have been. Instead of showing us the things she wanted, she would cry while we tried in vain to figure out what she wanted and how to make the screaming STOP. She could not sit still long enough to get anything done. Her hands were constantly on something new. She was all over the place at all times. And she got frustrated so easily. The music was too loud, there were too many people, she couldn’t do what she wanted, when she wanted, how she wanted. Whenever this was brought to her doctor’s attention, it was brushed off as normal. Even when she was 2 and not stringing words together. Even when she was 3 and not stringing words together. We kept hearing that she would do it eventually, she would eventually grow out it. Eventually. Eventually. Eventually did come. Her words came to her. They weren’t all that clear, but they were there. The energy never subsided but we got used to it. Her problems with the environment never got better, but we got used to it. We got used to leaving places at the drop of a dime. It became a joke that she may not wear something because it wasn’t soft enough or her she may not use a blanket because it wasn’t a certain type. And we ALWAYS had a blanket. I pushed aside all of my concerns because her doctor said she was fine. So, she must have been fine!

And then preschool happened. Preschool was hell for us to say the least. Her frustration? It turned to aggression. Her energy? It became too much to handle. Her sensory issue? Also too much to handle. being called to come pick her up from school yet again, I was over it and I called our local school district. I knew the steps to get an evaluation I just… I just never followed them. But, I was done at this point. I was over the hour long tantrums. I was over the lack of listening no matter what. I was done with bedtimes that lasted what felt like years. I was tired. So, I made the phone call. We were referred to our local mental health clinic and the second I hung up the phone with the school district, I called them because I didn't want to lose my motivation. I left a message and my call was returned the next day by an intake coordinator, she agreed, something was up. FINALLY. SOMEONE ELSE SAW IT. We scheduled an appointment for a month later because that was the soonest they had. I have come to discover that that is always the soonest they have. A month. Do you how much doubt you come by in a

month of waiting? Anyway, we went. It was me and my girl. We met the intake coordinator, filled out all of the paperwork and it was decided that she was going to start in their behavioral modification program for preschool children. She would attend three days a week, for two hours. Each week a parent had to attend at least one day. She was given her first diagnosis. ADHD combined type. To help with that, she would also see a therapist for individual therapy and a psychiatrist to discuss medicine. WHOA, WHAT? Yes, they wanted to prescribe my three and a half year old medicine. I resisted. I fought. I swore I would never do it. She was just a baby. Until, one she was trying so hard to sit still, you could see it in her face, and you could see her trying her damnedest. And she couldn’t. And what was worst, she knew it. She broke down and told me she just couldn’t sit still and she wanted to. So, I agreed. She started with the lowest dose of Adderal, half of a pill in the morning. She could focus when she took it. Which would be great if she didn’t also experience every side effect possible. Loss of appetite? Check. Mood swings? Check. Inability to sleep? Got it. You can see when the medicine hit her system and when it left her body. And, I hated it just as much as she did. They suggested Adderal XR. Same result. So, we stopped. I couldn’t do it anymore. She was also graduated out of her behavioral modification group at the time because she was doing so amazing. There were still problems at school. She was by now at her third, soon to be fourth preschool in her four years of life. I was still picking her up early. There were still problems at home but we had better tools in our box by now.

We were okay until she started kindergarten. By the second week of school I was on a first name basis with the school psychologist and was very acquainted with her teacher. And so it began. There were meetings with all of the administrators, a school site therapist assigned and her day was shortened. I was encouraged to not get an IEP because I didn’t want her to be labeled. I still pushed for one. And in March of her kindergarten year, we had her first IEP meeting. She qualified under other health impairments. I was told many times how rare it is to get an IEP for ADHD, but it clearly interfered with every part of her being. She would receive a one on one aide, she would be on a shortened schedule, she would get special education help with reading and math to catch her up. We were also referred once again to get a new evaluation. Which, again, was another ADHD combined type diagnosis and more drugs shoved our way. This time we tried Focalin and Intuniv. The same results as before. The teachers could not differentiate between when she was on the medicine and when she was not, which goes to show how well they worked. Throughout her kindergarten year, I learned to stay close to home. I learned that I could potentially need to stop what I was doing and go pick her up. Whether that meant shopping, working, putting the baby down for a nap. I was to be at the schools beck and call. One fateful day, I received yet another phone call to come get her. But this time was different. She was being suspended this time. She had lashed out at teachers and staff, breaking the counselor’s glasses. We would be having another IEP meeting before she could return to school. That day turned out to be her last day at that school. The IEP meeting was more of an ambush than anything. The director of special education from the school district was invited and my daughter’s placement was being discussed. They wanted to move her into a classroom for the emotionally disturbed at another school for the remainder of the school year and then switch her to another school for first through third grade. I was so exhausted at this point that I agreed to allow her to be changed to the special day class because the smaller class setting along with her one on one aide (who had not been hired yet) seemed like a good plan. However, I did not agree to her going to a new school for the remainder of the school year. She has problems with change. Changing the brand of peanut butter we used bothered her so switching between three schools in just as many months was definitely not going to work for her. So, we came up with a homeschool plan. We also used her weekly therapy sessions to get her used to her new school. We played at the park that was across the street and we were eventually able to walk our way through school grounds while she walked us through what school would be like. So, she was ready the first day of school. She was excited even. Which was amazing because she had begun to hate school and was using that hate to find new ways to get sent home at the old school. But, here we were. New school, new teachers, fresh start. Her one on one was there, her teacher seemed nice enough, and the school was beautiful. We were ready. September went swimmingly. She had rough days here and there, but who didn’t. October went well, but we were having more rough days. November came and shit hit the fan. The aggression was back and in full affect, she was picking up behaviors we didn’t even know possible for her and worst of all she was regressing. This turned out to be both a blessing and a curse. At this point we started another evaluation. This time we were getting a comprehensive evaluation. They would come and look at her at school, in the office and talk to me. I was hoping this would help shed some light because while ADHD explained some stuff, it didn’t explain everything. And I was fed up with basically hearing that it was just me seeing this stuff. So, the observations began. School got worse. I got frustrated. By winter break I wanted to pull my hair out. I couldn’t keep coming to pick her up early. I couldn’t keep getting panic attacks every time my phone rang. I just couldn’t. So, I suggested we homeschool. My family was on board. The school however discouraged it. How would she socialize? How would I handle it? Why? So, I put it on the back burner. They swore they would get better about following her IEP. They swore they were trying to find her a new one on one aide since hers had quit to be closer to her husband. And I put my faith in them. The evaluation dragged on. The phone calls kept coming. And one day I was asked to pick her up from school and I called different homeschooling programs on my way to her school. I also called her therapist to get her take on it. We decided I would wait a week so I could let her get used to the idea. And the following week I pulled her from school to begin our homeschooling journey. I decided to keep with a virtual academy. That way, we still had access to all of the special education help, just we got to do it at home. I was able to control her environment. I was able to implement her IEP unlike the school. I was able to help her socialize.

Then the day came about a few weeks ago. I got the phone call. Our diagnosis was ready! What was the end result? ADHD-combined type, generalized anxiety disorder and PDD-NOS. It was explained to me that yes, she is on the spectrum but they did not have the tools to access exactly where. So, we would have to go somewhere else for those specific evaluations. Another referral. We met the new psychologist, only to end up with a new referral. Which is funny enough a referral for a new referral.

That is our journey thus far. And there are holes. There are so many things that have been left out. Whether because I forcefully forgot them or there are just too many other things wanting to make themselves into this. But, maybe since I have given you this much of us, I will have the courage to give more at another time. I will remember the random stories. I will be able to give the good and the bad and the in between. Because, while this journey isn't easy damn, it’s been worth it.

Check out my fellow autism mom and friend, Nina's story... Also, check out Kristine Wylls who is the one who organized this blog hop, and started new friendships.