I am not really sure where to begin, but I guess it would be best to give a little background. I have four children: Rachael is 9, Ramsey II is 7, Rayna is 5, and Roman is 2. (Just in case they are mentioned in the future; however, this blog is primarily centered around Roman and our journey through his diagnosis of autism.)
Let's go to the beginning, for the sake of those that don't already know.
Roman was born at 38 weeks gestation. He was induced, simply because I had blood pressure problems, and it was getting to be too high. Since I was full term, my doctor thought it was best to go ahead and induce with Pitocin. My body took the induction well, and he was born after one push. My 7 pound 12 ounce baby was here and healthy. I stayed home on maternity leave for the six weeks my job allowed, and on the last day I called my boss and told her I would not be returning. I had started a job working from home, and I already knew I would not be going back, but I had to play the cards right in order to get my maternity leave pay. From day one, I was home with my son.
When he was seven months old, he had salmonella and we were in the hospital for 9 days receiving antibiotics and fighting the nastiness that had taken over. When he was 24 months old, he was diagnosed with MRSA, and again we were in the hospital for 5 days. While there with MRSA, he also had to have surgery done to clean and drain the location. Other than those two not-so-common-for-babies illnesses, he has been healthy.
I remember being home with Roman and thinking I must baby him too much. At 7 months he still was not sitting, standing, etc. He was my hip baby, and I loved every second of it. At 7.5 months, I remember being so excited that he finally sat up on his own. Much to my surprise, literally the NEXT day he was rocking on all fours, followed by crawling a few days later. Two weeks after he first sat up, he was WALKING!! He walked just after turning 8 months old, which made him my second fastest in the walking world.
I decided to go back to school full time, as did Ramsey, and I had to put the kids in daycare (the two that were not in elementary school). I found the most PERFECT place, and he started going all day, every day. I have never had a negative thing to say about the preschool. I love them, and I trust them 100% with my child. They are simply amazing. Soon after Roman started attending, the director came to me and discussed his evaluation with me. She had a little concern over his lack of speech and was wondering if I was willing to have him tested. I have never been one of those "My child is too perfect" kind of parents, so I agreed.
At the testing, I sat there observing. I watched everything that the woman did with my son. When it was over she informed me that the results went like this: white = normal, gray = below average but not necessarily a problem, black = delayed. Roman's speech was in the black and his occupational (I think??) was in the gray. While she wasn't overly concerned about the gray area, the speech was a problem. He only said 3 words at the time, and he was 24 months old. She set us up with a speech therapist and she began seeing Roman once a week, an hour at a time, at his daycare.
A few months into therapy, I stopped her one day and asked her if she was concerned at all with regard to autism. I had noticed Roman would scream A LOT, a very high pitched and random scream. He would do a few other things that were funny to me, but I wasn't sure myself so I asked her. She informed me that he had a few "quirky" things that he did, but that she was not going to rush into labeling him autistic. I was content with her reply, and we continued therapy.
Recently, in the past month or so, I have really noticed the screaming getting more common and out of control. He still, at 32 months, only says about 10-15 words consistently. He doesn't put words together, or interact with other kids. He lines his toys up in a perfect line, and if you mess with one you would think you ruined his entire evening. I found a friend of mine on facebook from high school and began asking her a few questions once I found out that she had an autistic son herself. After telling her why I thought Roman may be autistic, she confirmed that her son used to do the very same things. The screaming was a key common factor. This led to me doing my own research on autism and signs and symptoms that a parent can watch for.
On Monday night (9/3/12) I branched out and looked at the autism checklist for toddlers that I found via google. When I realized Roman had 90% of the checklist checked off, I panicked a little bit. I tried not to over think the whole thing, because clearly I am not a doctor, but when you are a mother... there is just a feeling you get sometimes in the depths of your gut that tells you something is seriously wrong. I had that feeling, and it wasn't going away.
The next day, Tuesday 9/4/12, I went into the daycare to drop Roman off. I had mentioned my concerns to two of his favorite teachers and wanted them to let me know what they thought. One had seen a few autistic-like behaviors and suggested getting him tested just to be sure, and the other was going to observe him. That afternoon, however, when I went to drop his carseat off for my mom to pick him up when she got off work, his therapist was there....wanting to speak to me. She came to the counter and we started talking. She was telling me about progress that she has seen. I noticed she seemed as if she was choosing her words very carefully. I finally interrupted her and said, "Let's talk autism..." She was slightly caught off guard, but said "Yes, I wanted to discuss that with you....................." At that point, my heart hit the ground. She agreed. She knows something is wrong too.... is all I could think. We discussed Roman for a bit longer, and after a 20 minute conversation, we agreed to test further. She informed me that as a speech therapist she cannot make the official diagnosis, but she wanted to make sure that I was prepared, as she is 99% sure that I will be given an autism diagnosis. She does not feel that it is severe and believes it is a high functioning type of autism, but autistic nonetheless.
I knew those words were coming, I just knew it.... but hearing them was like the phone call you dread getting, the words you never want to hear. My heart was broken.
I went home, in a daze. I was on the phone with Ramsey and was going over the agenda of what was going on with the kids, and I said to him, "Ok, well when you get home there is some more stuff I need to talk to you about..." After asking what was going on and telling me he had time to listen, I just started beating around the bush... he seemed as if he was getting annoyed... so I just blurted out "Roman is more than likely autistic!!" I was not sure what to expect from him, so I simply said I needed to go and would call him back later. When he got home, the real "soaking it in" began. He was telling me he felt that it was his fault....for not being there a lot, not reading to him like he did with the others, not working with him and talking to him as much, etc. I tried explaining that that has nothing to do with it and that it is so much more than that. I started wondering if it was the H1N1 shot, the flu shot, vaccinations I had voluntarily signed to have him receive... the typical parent reactions, I guess you could say... we both were looking to blame ourselves, while we were both still somewhat in denial about the entire thing. I admit, I broke down that day. I cried a lot. One of my best friends came over, knowing I was not okay after I tweeted about it, and I broke down crying hysterically in my living room begging her to pray for me.... to pray that I would have patience with him... through this... and that I would just be a good mom for him. I seriously doubted my abilities to raise him. Would I be what he needed? I have all the love to share in the world, but would love be enough?!
The next day I had plans to meet with one of the pastors from my church for coffee. We naturally discussed this topic, which was good for me because I had held quite a bit of my feelings in. I was a crying mess, but I wasn't really TALKING about what was inside. As we were talking he made a statement that I knew, deep down, but I was struggling tremendously with. He looked right at me and said, "God doesn't make mistakes.... He has a plan for Roman, and he has entrusted Roman to you...He CHOSE you to be Roman's mom, and you can do this..."
The rest of the week has been a rollercoaster. I cry.... then I smile.... then I get angry.... then I question God on why it has to be MY kid... etc. I think it is just going to take some time to fully soak in and for me to be 100% okay with this. One thing I DO know is that God knows what he is doing. I will end this with a quick piece of proof that I know God is in control, because I think it is pretty awesome...
I was brushing my teeth Wednesday morning (the day after this all happened) and I got brave. I questioned God. I was brushing away when I thought "Ok, God... you supposedly know what you are doing all the time.... I want you to prove it.... prove that You know what You are doing with my baby...." No sooner than I finished the thought, my eyes fell on a necklace that my friend Bekah had given me last year for my birthday.... a BFF necklace... in the shape of a puzzle piece.... which also represents autism....the necklace that I had not worn since vacation seven weeks earlier and I have no idea how it got to the location where it was laying....off the necklace, just the charm.... right there for me to see.
So, in the end, I know this:
1) God is in control.
2) My child is surrounded by SO MANY people that love him.
3) It will all be okay.
In the meantime, I am fragile. If you see me, hug me...I probably need it. I may break down, I may not. All I know is I want SO BAD to fix this....I would do anything in my power to fix it.... but there is absolutely NOTHING.I.CAN.DO. and that just pisses me off.
This was a long one, but the rest won't be this long....I promise. ;)