Wednesday, October 29, 2014

A Diagnosis-the Beginning of a Journey

So yesterday we had the feedback session via Google Hangouts with the doctor who evaluated Christopher. He is definitely autistic (what we expected) and he said that if we were to measure the spectrum on a scale of 1-10, Christopher would be around a 5-6. Despite this being what we expected, I found myself feeling even more overwhelmed. I immediately started thinking about what to do to get services started. I got in contact with the case worker who would help with getting the Medicaid waiver and then I started making other calls about services.

I started to contact the schools and some private therapy places. I started to feel like I had to get something started because I couldn't possibly be the one to help him. After all, I'd been the one in charge for the past three years, and here we were. I chatted with a few of my online friends that have some older kiddos that have autism, and they all told me in various ways that we are who he needs. I don't have to make any decisions right now; as Jason pointed out, we still haven't received the suggestions that the doctor is going to send us, and waiting isn't going to make any differences. In other words, I can't make things worse than what we are currently dealing with.

The diagnosis seems kind of like an end; and it is, it's an end to the wondering, and the questioning. But it is more importantly a beginning. Whatever therapy options we choose, this is a journey that we are embarking on that will shape not just Christopher, but us as well. It's an important choice, but it isn't a permanent decision. Deciding to do private therapy or focusing on techniques we do on our own only doesn't mean that we can't send him to school later; if we chose to send him to school it doesn't mean that we can't choose not to later. What Christopher needs the most is us, he needs us to help him through this time so that's what we are going to. Be a family, and work together, rejoice in the positive moments and struggle through the difficult times. Together.

Monday, October 27, 2014


At Mass this morning, as I tried to calm down Christopher and the priest looked at me with concern (Christopher was slapping me and screaming), I had a few thoughts. My first thought was a prayer (please, Lord, help me to be the mother that Christopher needs, and please don't let me neglect Dominic in my mothering of Christopher), but then I was thinking of parents of kids that have special needs.

When Jason and I were first married I worked in Garden City at the hospital and I would stay there during the week and come home on the weekends. When I was pregnant my doctor put me on weight lifting restriction and I went from working in-patient to doing out-patient therapy. This allowed me a unique experience one afternoon. A couple came in with their young son who had CP and who they were just a little worried that he was getting too tight on certain muscles. I watched as the therapist did an evaluation and walked his family through some stretches. I watched, and listened, as this PT told the parents that even if the son expressed pain (he was non-verbal, but his face was full of expression) they needed to do the stretching to the level he was now teaching them. The mother seemed pained, but she did the stretching as she was taught. The father was much more stoic about it, but he too flinched when his son yelled out in pain.

Later I was telling Jason about that moment and I said, how do they do it? And he said something to the effect of, that he imagined they didn't think about it, that they were parents and that they did what needed to be done for their kids. I mentioned then, as I have numerous times when faced with watching a parent and their special needs kiddo, that they were chosen. Those kids were lucky/blessed that they were given to the parents that they had; that their parents were able to handle everything with grace and be the best parents for that child.

Until this moment, I never gave any thought at all to us being chosen as the parents for Christopher. I mean, more than the obvious. I had never thought of us as being parents of a special needs kid and doing what needs to be done for that child and just doing it. But as I looked at the priest this morning, and as I saw the mom behind us reach up and give Christopher the sign of peace and smile at us, I realized that people might have those thoughts about me, about us. "How do they do that?" "Why can't she stop his slapping and his screaming?" And then Christopher pulled away from the swaddle/hug he was wrapped in my arms, and I braced myself for his screech, he looked me right in the eyes and he smiled at me and then he hugged me. My heart melted and I was filled with such joy; that is how parents of children with special needs do it. Those wonderful, loving moments when the child expresses in whatever way that they can, that they feel safe with you, that they love you unconditionally. During the consecration Christopher is entranced; he watches the priest do all the motions, he beats his breast at the consecration as he has watched his dad and mom do, and he often lifts his hands and flaps his fingers in front of his face in excitement. Those moments make up for every single difficult moment.

Tomorrow we'll have the video chat with the psychiatrist and we'll have a definite path of what to do next. I continue to pray that God blesses me with being able to be the kind of mother that Christopher needs, but I'm going to be adding another prayer of thanksgiving that I get to be his mother, that we get to be a part of his world-he has such a very small world right now, but that we are part of it is an amazing gift.

Monday, October 20, 2014

A Christopher Update

There has been so much happening with the situation with Christopher that I haven't updated much recently. I mentioned before that our insurance adjuster told me that we should be able to get an autism evaluation covered through our mental health portion of our health insurance, so I set out to figure out how to do that. A friend on Google+ mentioned that they had the evaluation done for their son with a psychiatrist and so I decided to look into that. Another friend mentioned the Autism Speaks website as a good source of information and so that's where I decided to search. I found an impressive list of Colorado providers, and basically just started calling the stand alone psychiatrists on the list. I got one call back (eventually I got a second one, but not until after we'd already been scheduled with the first one for a week), and it was actually the doctor himself. He spent about 20-30 minutes on the phone with me getting a basis and then we scheduled.

It was about a month out, but that was much better than the 3 months or more that we had to wait for the Children's Hospital appointment. He checked on our insurance and gave us an estimate for out of pocket expenses.

The appointment was this past Friday in Ft. Collins, CO, which is about 4 hours from us. We decided to get a hotel room so that we didn't have to leave at 3 or 4 in the morning (9am appointment), and that way we could enjoy an indoor swimming pool and relax a little. On the way up, I talked Jason into staying an extra night even.

I was so nervous before the appointment. While, I didn't have many doubts prior to the appointment that Christopher would be somewhere on the spectrum, I'd be lying if I didn't say that I was hoping that one morning he would wake up speaking in full sentences. The first hour and a half maybe was spent with just me and the doctor going over history; from pregnancy to right before the appointment. He asked about a myriad of different things: does he play well with other kids? (no) does he self-injure? (yes) does he have any hand gestures? (yes) After that he set up for some tests with Christopher. Jason had been hanging with both boys in the waiting room, and took Dominic out while I took Christopher back to the room for the testing.

Christopher handled everything really well. We had about 2 minutes of screaming/throwing his head around and hitting me, but the doctor was really great with him and brought over a clock he had noticed Christopher liking and that pretty much eased him in. He wasn't able to do any of this testing really. The doctor showed him a series of pictures and wanted Christopher to pick out something specific. He tried several times, and had me try as well, but Christopher wouldn't even look at the pictures. He got out some colored blocks and Christopher was very happy with this, but the doctor was going to have him do some specific things, like stacking certain colors and only a few blocks; Christopher was having none of that! He kept stealing the doctor's blocks for his own tower. I'm pretty sure that those tests were inconclusive, and he sent us back to the waiting room again while he got an assistant and set up the room for the next series of tests.

This last set of tests was interesting. I was not allowed to engage unless the doctor told me specifically to, which was very hard. I found myself wanting to make excuses for him ("he doesn't normally play with those things" or "he's never seen a remote control rabbit"), but I did pretty well with just following directions. Again, it took about 2 minutes for Christopher to calm down and start playing. There were various things he tried to do, like get Christopher to play with anything on his own, try to get him to follow his sounds, anticipation for tickling. At one point it was time for the doll's birthday party and he tried to get Christopher to take part in the birthday party, but Christopher just wanted to rip up the cake (play-doh), though he did clap for the doctor when he sang Happy Birthday. There were bubbles and balloons, which showed us the finger flapping that Christopher does (we couldn't remember what specific hand gestures he did, it was so weird, until we saw it). The remote control bunny was what the doctor used to try to get Christopher to look over at something that he was looking at, which Christopher did not do.

After that portion there were about 4 workbooks that I had to fill out. Lots of questions with does he do certain behaviors and how often does he do them. That was kind of eye opening in and of itself because there were some behaviors that Christopher definitely does that I had no idea were "red flags".

All in all I think things went really well. Christopher participated so much better than I thought he would do, and he didvery behavior that we've been worried about. The doctor really got to see a full picture of what Christopher is like. There will be a feedback appointment where we will get the diagnosis as well as some start for how to progress from here. And, this awesome doctor of ours, is willing to do that appointment via video chat so that we don't have to make another trek up there. That is winning in my book!

That was a bit of a brain dump. I wanted to get everything down so that I don't forget anything, but if anyone has any questions, feel free to ask and I'll elaborate on anything.

Another amazing G+ auto awesome where they put together multiple pictures-this time giving us 2 Christophers :)

Monday, October 13, 2014

The Spano Paleo Plan

I read the success that a blogger I follow had doing a 30 day challenge of paleo in combination with her cross fit and running regime. It really seemed so great that she had such success, that I decided to give it a try. And force Jason to do it with me.

So, for the record, we are not changing our lifestyle permanently to live paleo. I'm doing this purely to lose weight (which we are!) and I am extremely excited to have cheese and bread in 23 days. If you don't know much about paleo, basically it's grain free. I would say low carb, but you're still eating fruit which is high carb, but no grains or breads or anything like that. Also, different from every other low carb diet I've tried, there is no dairy allowed. If I continue to have such good progress though, it is likely that I'll continue with this in some form, possibly with one cheat day.

I would love to try out a cross fit class, but we don't have any here...I'd likely have to travel to one of the big cities. Maybe we will some Saturday just to drop in on a class and try it out. But, I am continuing with my couch to 5k and I'm having good progress. I've done two 5ks but only running the time my program suggests and basically finishing out walking.

This was the color run I did in Las Animas this weekend. I ended up with a longer distance, but I actually felt like I was struggling during the whole thing. Because the course was kind of hilly I seemed to have a hard time pacing myself, and I kept getting a stitch in my side. I'm really proud of myself though.

We are also starting the new Beachbody workout P90 tonight. So excited!