Christopher's Progress

Considering that I haven't updated anything about Christopher in FOUR years, things will be really big here! Christopher has done so much in the last few years that in some ways he seems like a completely different kiddo. In other ways he is still very much the same!

First and foremost, Christopher speaks. He can't necessarily carry on a conversation with you if you are not interested in what he wants to talk about, but he can and does definitely verbalize things. I would say that for necessary communication we're at about an 80% give or take. When he is really upset/bothered by something he cannot always tell you what is going on. For instance, he really doesn't like the bells being used during the consecration at daily Mass. Instead of saying something like "I don't like the bells" or even "no bells" for a while he would say "punch/kick/hit Olivia" who is one of our friends' daughters and she is really a great kiddo who was altar serving at daily Mass for a bit. He really likes Olivia, she's one of his favorite friends, but he couldn't figure out how to articulate that the bells were bothering him so instead he blamed the person who was making the noise.

Something else that has been amazing is to see how he is with Benedict. We were really worried about how he would handle a crying baby, something that we couldn't control the sound with. But, it was actually not something to be too worried about; initially he was really upset but then we just put Benedict in his lap and suddenly he was "Christopher's baby" and Christopher was holding him often. Funny thing though, he had to pull his pant legs up!

And then we have him and Dominic. They have moved into a really typical brother relationship which is super cool and super annoying simultaneously. Most often if he's annoyed with Dominic it's for pretty normal reasons and he reacts in that normal way. Interestingly, when we were going through the really rough stage with Christopher, Dominic could sense when it was an autistic meltdown and would just sit there and take it. Now we have to remind him when Christopher is having a hard time because he's autistic and when he's just being a bratty little brother. But they are still best friends and do really play together these days!

Currently we don't have Christopher in any therapies, I took a course called More Than Words with his speech therapist that got him his "talker" or communication device. It was amazing and I'm actually planning on doing a refresher course and going through some of the lessons to work on specific things that he's struggling with. We attempted to restart OT and Speech when Benedict was about 4 months old but it was just too hard for me because it was an hour away. And, with his progress it seemed to be more than what we needed at the time. Speaking of his communication device, he still uses it, but it's often to learn new words or work on sentences. He's started using the keyboard to type out the words if they aren't in his dictionary on there. Because, OH YEAH HE CAN READ!!! That came as a shock as we'd never worked with him on it specifically but suddenly we realized he was reading signs. He can read all the words to me when he does his phonics in school as well as reading his spelling words. Seton helped us to set up a modified course for him with different courses than what Dominic used when that seemed appropriate. Primarily English and Math right now. We are having him sit in on Dominic's religion lesson and then we were gifted a set of these 1st Reconciliation and 1st Communion sets by Beth Anne. It was an amazing thing and he can often be talked to about his behavior with words from the 1st Reconciliation kit including "is this a bad choice?" Which he will often reply to with "No bad choice Christopher! Sad Jesus!" while sobbing, and really, does it get more pure than that?

All in all Christopher has made really awesome progress. He even does things sometimes specifically to get a reaction from you and joke/play with you. Of course, then it becomes a script and deviation is not allowed, but you know...baby steps! 😁

Speech and Occupational Therapy - Oh My!!

Christopher has Medicaid! He has started OT and SLP! He is making progress!! Hooray!

**yes, I do know that I haven't posted here in a really long time. I have been thinking and thinking of blog posts, of wanting to get back into it, but for various reasons just haven't gotten to it. So here I am, making an attempt.**

So, after a long, painful application process; Christopher's Medicaid became active in September and we wasted no time in getting some therapies started. He is doing exceptionally well with OT and moderately well with Speech.

We are getting some great techniques to help calm him down when he's upset. Specifically brushing. We aren't doing the whole protocol, but we are definitely finding that it helps calm him down when it's necessary. Even Dominic has gotten in on it.

We've started using his headphones at Mass and have really seen some improvement in his behavior and emotions there. Even other people have noticed and mentioned to Jason one Sunday.

He has recently been really preferring Jason to me, so much so that he not only rejects me when Jason is home, but he often doesn't want any comfort from me during the day. This has been...emotional for me. It's been a little rough. I think that there is something that he needs, that I'm not giving him, and because of the lack of communication, he can't tell me. When Jason is home, he's so happy that he doesn't need whatever it is he does during the day. That's my completely unprofessional opinion. ;-)

We played with play-doh earlier this week and Christopher amazed me. He normally just tears the play-doh into tiny and tinier pieces. This makes him happy, he enjoys it, so it's still a win. But the other day, he did this:

He figured out how to work that and just kept making a snake, then putting it back in and making another. He was intent. And happy. We played a long time. So now our play-doh is in one bucket: 

But that's just fine. 

Oh--Ahem--A Blog!

Ahhh it has been much longer than I would have liked since my last blog post. I have much that I want to write about, and I've just been thinking "I'll do a blog post about that soon", and I have yet to do any. So this is going to be a bit of mashup of all that has been happening in the months since my last post.

We are still nowhere with getting Christopher coverage to start therapy. I thought that maybe things were looking up as the person from Southeastern Developmental Services (which is our local service that helps people with special needs, from children to adults) brought some paperwork for us to do and she made it sound like we would get funding soon. However, things piled up on her plate and it's been about a month since I saw her last. But, she has scheduled an appointment with me for Friday to bring the end of the paperwork and hopefully I'll have a time frame on when coverage might start. At one of the other nearby hospitals (sorry PMC) the speech therapist has a connection with a group that does scholarships to provide speech therapy for those whose insurance doesn't cover it, and I'm looking into that as well. I have to just finish that paperwork and send it off, I've been delaying on that simply because I'll have to pay for the evaluation and that's kind of pricey.

In the meantime, I'm working on being better at working with him. It is hard to remain focused and limit screen time. These pictures show some of our activities when I'm trying to keep him away from his device.

Dominic is set to start Kindergarten with Colorado Prep Academy through K12 online schools. I'm really excited for this because I feel like it will give us the best of both homeschooling and public school. The person who helped me register said that for Kindergarten it is 80% offline and 20% online; they sometimes have video chats with their teacher one on one and sometimes all the students video chat together. I'm very excited to see how this works. Dominic is a little young for our district's standards (he turns 5 in August) but we're going to give it a try. If he has to repeat next year then he does, it isn't something I'm going to stress about right now. Of course, having public school allows for us to have an IEP for Christopher next year and therapy services normally provided in school. I'm stoked about this for sure. It's hard for me to imagine either boy actually learning and doing school work, but I think they'll do well.

I have some plans for an update post about my weight loss, but I need to do some research about where I was the last time I posted. I have many posts in my mind, and I'm hopeful that I'll start posting regularly again!

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.

Chosen?

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.

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 :)

Insurance, Autism, and Gymnastics <--summary

We had Christopher scheduled for an Autism clinic/evaluation last Friday, but on Thursday we got a call that our insurance wouldn't cover it. According to our insurance, Autism is a developmental delay, and our insurance doesn't pay for evaluation or treatment of developmental delays.

So right now we are trying to figure out waivers for Medicaid (we would never qualify normally) or some other options with our insurance. An adjuster told me that we should be able to have the evaluation covered under the mental health portion of our insurance, so we are looking into that as well.

And we are looking at another option as well. Though more hesitantly. If you've read the blog, you know that we plan to homeschool, but there is no public school provided assistance if you homeschool. So that is kind of our last option. If we put him in school he will get services through the school. If that is the best option for him, we will do it because we know that it is important for him to get the services he needs. But, it definitely isn't what we want to do. So, prayers are appreciated that the best option comes out and we get Christopher the help he needs.

On a bit of a brighter note, we started a romp around class for the boys today at our local gymnastics gym. It's mostly free rein; there are trampolines, foam pits, a bouncy floor (like what they do floor techniques on), bars, and balance beams. On top of that there are some extra mats and other fun gymnastics things. The boys loved it. It is from 9-11 and for most of the time it is free, and the last half hour or so they do some parachute games and sing songs. The boys were pretty much done by around 10:45 so we didn't do that well during that time. Christopher just wanted to be under it and Dominic wanted to be on top. But, they got to play with other kids and Christopher did pretty well with that even. He touched a baby nicely, and he let another baby sit with him in the toy bin. Those are big wins for us. Dominic was, of course, in his element as he loves being around people. Meanwhile, they are both napping right now. :)

7 Quick Takes - Vol 15

Linking up this week with Cari who is covering for Jen!

--- 1 ---

So Christopher has speech therapy twice a week, but normally it's a developmental aide (I think that's what they're called) that comes in and then once a month the Speech Language Pathologist (SLP) comes in to see him. Well this week was the week the SLP came and she gave us some idea towards what is causing his issues. She thinks he might have speech apraxia. If you read that link, it is almost everything that Christopher does with regards to his speech. So she gave us some tips to help him out. But, she also caught some things that are red flags, that might lead us to a more serious diagnosis.

--- 2 ---

If you read Cam's blog, you might know the journey that she is going through with her youngest daughter, Mae. As she was documenting some of the things she noticed about Mae, I also saw some things that Christopher does that are similar. We are going to see a developmental pediatrician who might come back with a diagnosis with Christopher on the autism spectrum. But, it might not. I'm trying really hard not to stress about it because it could just be the speech apraxia and the things we are going to do to help with that developmental issue might take care of everything. I won't lie, I feel stressed and overwhelmed and unbelievably guilty. It is so easy to look at something and say it must be me, or something that I'm doing wrong; but after talking to a few friends I feel better about that. I know that diagnoses like these come to all different families with different parenting techniques.

--- 3 ---

That being said, there are some things that we don't currently do that we are going to work on implementing. We have maintained a really laid back parenting style with no real routine/schedules. So, we are going to be working on a much stricter schedule as the SLP thinks that this will really help him out. I think it will also help Dominic too, even though he just tends to create his own routine, this might help him feel a little better about things. I'm going to take pictures of things that he regularly eats at our house and create a flip book to help with his communication too. The picture with the word should help a lot. We will also be creating a picture schedule so that he knows what we will be doing throughout the day, but this probably won't make much difference for a while. But I think I will make one for Dominic too so that he can see it and knows what to expect more too. We are putting Christopher back in his high chair for meals and so far that has been helping a lot. He's been eating a lot more and he hasn't cried at all when he's been in there. It just makes me see how much structure this kid needs to function well.

He even ate with a spoon for the first time EVER!!

--- 4 ---

Whew, that was a lot of deepness...it's time for some frivolity!

The boys and I went for a walk to the library and then the store, but they got tired on the way home and we stopped at the community building to "rest" but the boys found some water. Of course.

--- 5 ---

I haven't updated much on my weight loss lately, and I plan to do more soon, but for now I just wanted a brief update. I'm kind of stuck in a plateau right now that seems to be around 258.5-262. I'm not sure why, it might be a female/hormonal thing, because it feels like my measurements are always done right in the middle of a cycle; but I might need to pump up my exercising. I hope to figure it out soon. :)

--- 6 ---

Meanwhile, Jason has been doing the diet with me and he seems to have better luck than I do! He's dropped about 7 pounds already. Impressive since he's been so crazy at work and hasn't done his regular workouts. Of course, he does ride 3+ miles a day on his bike...

--- 7 ---

I can't think of anything else...so instead here is this video of Dominic. He has been enjoying watching this several times and he giggles at himself the whole time!