Colorado or bust…

Growing up, my family visited Estes Park, Colorado almost every year. My oldest brother moved out to Colorado and gave us even more reason to visit. To say the least, Colorado is a home away from home. So of course when my nephew who lives in Colorado announced that he will be getting married in Estes Park, we were all excited to be back there together again. This was over a year ago when we found out where the wedding would be. It was only Courtney and we weren’t seeing all the sensory issues and other characteristics of autism that we are seeing now.

So after adding another child to our family, and Courtney having more sensory issues, to say I was a little anxious about this trip is an understatement. I couldn’t bare the idea of canceling since my entire family was going to be at our favorite vacation spot again, but I also was having nightmares of how the trip would go. Would Courtney handle the plane ride? Would we be able to keep her from scaling mountains? Would we survive 5 days in a hotel room with both of them since one goes to bed early and the other one goes to bed late? Etc…

As we got closer and closer to the trip, we got very close to canceling. It wasn’t until I talked to my dad the absolute last night before we could no longer cancel the hotel without it costing us, that I decided we were definitely still going. I finally came to the conclusion that this is our life, but I can’t let autism run our life. Heck, my parents did this several times with 10 kids!

Both girls did a lot better on the flight than we expected. The trip from Denver to Estes was a different story. We decided to skip out on the rehearsal dinner because the girls were DONE! Instead we got settled in our hotel, got them to bed and enjoyed our own little picnic in the room. Turned a suitcase into a picnic table, bought some beer, ordered Mexican food and enjoyed the beginning of our vacation.

The wedding was the next day. We had a nice morning that included a nice long walk. Went to head to the wedding, feeling somewhat confident that I knew how to get there. Figured with the help of the GPS on my phone we should get there with ease. Forgetting that in the mountains, that reception SUCKS in the mountains and that it’s been over 10 years since I had been to the area… we didn’t make it to the wedding. We did make it to the reception though. Courtney had no interest in being in a reception hall. I realize this could be very typical for a toddler. The difference is, you could see in her eyes that part of the reason why she didn’t want to be there is because it was way to overwhelming. It was loud, there were a lot of people, it was out of her routine? Little meltdowns kept happening. We finally took turns inhaling our dinner and left. So the main reason why we went to colorado became a fail. Felt so bad that I missed most of my nephew’s big day. Mood did turn around as Joe and I decided to take the girls for a walk through the downtown area. Walks help her so much!!!

36 hours down…girls-Many, many meltdowns…mom-3 meltdowns. Going to be a fun week!

Now, the trip did turn around. Yes, the girls had many more meltdowns and I had a few more too. But again, they’re little, bound to happen. Heck, “mommy meltdowns” are common too. The trip was filled with some driving through the mountains, picnics, visiting family members at their cabins, and every changing sleeping schedule. Though Courtney loved being outdoors, you can really see how the change in routine and being out of her comfort zone was really affecting her. She wasn’t eating much, lots of whining, lots of wondering and just a stressed look. The last night, she was so overwhelmed at a gathering at my sister’s cabin that we ended up spending almost an hour in a bedroom away from all the people and noise. She was so happy jumping on the bed!

Needless to say, with the help of my awesome husband and family, we got through the trip. Flight home also went ok, except for the fact that one of the car seats was “misplaced”. What was eye opening, was watching Courtney once we were back in our own house. Her body suddenly looked relaxed. I didn’t realize how tense she had been this past week until I saw how relaxed she was once we were home. Poor thing!

Yes, the trip had it’s stressful moments. We came home so physically, mentally and emotionally exhausted. BUT…it was so good to be back “home” again with my amazing family. As exhausting as it was, I am so glad we made the decision to go. AND the best part??? Joe loved seeing the Rocky Mountains for the first time and he says he hopes to return there. So Colorado was not a bust!

Diagnosis…now what?

imageOn Monday, June 27th, Courtney was officially given the medical diagnosis of Autism. I said in my last post…”let the journey begin”. I misspoke. The journey isn’t just beginning. The journey began September 5th, 2013 when Courtney came into this world. Nothing has changed. She is still Courtney. She is still our very energetic, beautiful, little girl who loves life. She still has the same big beautiful blue eyes  that are watching and observing everything. She is still our little monkey…and trust me, she fits that nick name in every way possible. The diagnosis of Autism doesn’t change any of that. What it does do is open up the door to other therapies, strategies, and people who are ready to help us along the way.

Joe and I were not surprised at all when the doctor said the diagnosis. Of course it still stung a little bit to hear it and I’m sure I will have my good days and bad days when it comes to accepting what lies ahead. What I wasn’t prepared for was the many suggestions of things to look into to help her and how overwhelming it would all be to decide on where to start. I can’t even begin to imagine how a parent without the background that I have feel. The team discussed a few strategies and therapies to look into that I already knew about. That I already spent years researching and even getting trained in. How would this all feel if I didn’t already know all this information. I have spent the days since Monday making a few phone calls and trying to decide where to start. But the question I keep asking is…how do I know if I’m doing enough or doing too much. Yes, research shows the more intense therapies the better, but she is also a little girl that still needs to enjoy being a little girl. And by the way…these phone calls are all being done while holding an infant who doesn’t want to be an inch away from me and attempting to keep Courtney from swinging on the chandelier. You think I’m exaggerating on the latter part…well I’m going to refrain from posting the picture in fear of getting authorities called on me.

So here is how I should have ended my last post…let the journey continue!

Rewind…

I’ve been asked a couple of times when I recall the regression started with Courtney. I only wish I can pinpoint the exact time, but I can only give an estimate. What I can recall is one day she was standing at the top of her little slide singing “Let it Go” and now I don’t hear the word “go”. One day she was at her grandma’s house walking on the stepping-stones with numbers on it and counting backwards from 5, pretty clearly and now I think we have heard a couple times something that sounds like 1,2,3. One day we could take a picture of her and all we had to say is “say cheese” and she would look at us and say “cheese”. Today, she doesn’t respond to her name let alone, “say cheese”. Heck, she doesn’t even sit still to take the picture. I shared my concerns with many people that I was worried about her language development. Most friends and family told me not to worry because children develop at different rates and I really wanted to believe that so I kept delaying doing anything. I started talking about my concerns with a close friend and one of my sisters, both of which have a background in speech/language therapy. They too tried to keep me from worrying but the more I talked to them the more they encouraged me to get her evaluated. With my background in Autism, I started to wonder. My friend and sister tried to keep me from jumping to conclusions but again, as time went on, I could tell by our conversations that they too were thinking the same thing. Especially my sister who had been down this same road.

Then came the end of August when I went back to school. It was the hardest two weeks with little Courtney. My happy little girl became a very unhappy, almost colic like, little girl. Her grandparents would report when I picked her up that she cried on and off all day. Evenings were just the same. The only thing that calmed her were, me holding her, walks in her stroller or car rides. I was 7 months pregnant so these weren’t all easy tasks. It was heartbreaking. After a couple of days it became apparent that she was constipated. After a lot of miralax on a regular basis, the happy Courtney returned, but the skills she had lost did not.

Without a doubt, she qualified for speech/language therapy and occupational therapy. We also finally had her 2 year check up. I told her doctor some main concerns…regression, no words, and doesn’t respond to her name. She immediately recommended that I go for a medical diagnosis by a developmental pediatrician. I knew what that meant right then and there that she was thinking the same thing I was…Courtney was showing characteristics of Autism. Little did I know though that the process to go see a developmental pediatrician was long. How long?

Fast forward a little bit. Somewhere during that fast forward I nearly died giving birth to Alyssa, got Courtney evaluated through Early Intervention, had several months of therapy including (OT, ST, PT, and DT) to tonight. Tomorrow we are finally seeing the developmental pediatrician. A 6 month wait!

I have spent 10 years teaching preschoolers with Autism. I’ve taken many courses, attended many workshops, and even lead workshops on how to work with children with Autism so I’m pretty knowledgable on the subject. When it comes to my own child though…I feel clueless and helpless.

So…i suck as a writer, and I’m not sure I really have the time to do this but I thought I would keep a blog on the journey of being a “special needs” mother. Let the journey begin!