Family Time

This past week I made the tough decision to take a break from the church choir that I have been a part of for MANY years. I was starting to feel like choir/church was taking a way from time with my girls. Thursday nights are choir practice and I would leave them with my parents while I went to practice. Then on Sundays, they spent the morning in the nursery while the choir practiced and then for the service. I spend 50 + hours away from the girls during the week for work and then add another 3 hours or so for choir/church. When I am home with the girls, anything we do as a family is scheduled around Courtney’s therapies. If you do the math, we really have very little time to do anything as a family. It was a very hard decision to take this break because my church family is very important to me. Especially the ones in the choir. Most of them have known me all my life. They have been by my side through many ups and downs. Heck, I spent 10 days in Ireland with some of them. But deep in my heart, I knew I needed to do this.

This weekend confirmed that I made the right decision for the time being. Saturday night I said to Joe that we actually had nothing we HAD to do on Sunday until 4 pm. This seriously NEVER happens! I insisted that we were not going to sit around all day. We brainstormed a few ideas of what we could do, but in the end we decided we wanted to take care of a couple of things we have been meaning to do but kept delaying.

So this morning (Sunday) we woke up and decided to go to breakfast. Something we NEVER do. After that we took Courtney for a hair cut and then went shoe shopping for Alyssa. Even though it was running around, it was so nice to spend time together as a family. We weren’t worried about rushing to get everything in, we weren’t worried about how the girls would behave, and better yet, we crossed things off the to do list.

I’m going to miss singing in the choir for the time being, but its just a break. And maybe it doesn’t sound great to say I’m taking a break from church, but if there is anything I have learned it is, family comes first. This weekend I put family first and it was truly a wonderful weekend.

Mommy knows best…

Back when Courtney was a month old,she  was colicky, gassy and poopy diapers were out of control. The doctor had us switch formulas. It helped some but still felt something wasn’t right. I asked her doctor if she could be sensitive to dairy like me. They kinda laughed it off saying you really don’t see an intolerance at this age and she didn’t have the symptoms of a dairy allergy. I finally on my own decided to switch to Soy formula. It made a world of difference!

Months later when we getting close to 12 months old, the doctor said we could start switching to cow’s milk. I asked if they recommended soy milk. They suggested trying just regular milk because they still didn’t feel she was lactose intolerant. We did regular milk and we really didn’t notice any issues so maybe the doctor was right after all.

Fast forward to now…for a while now, Courtney has struggled with chronic constipation. I would also notice by the end of the day she would be super bloated. I figured it had to do with the constipation. After adding miralax to her diet, the constipation has gotten much better. The bloated stomach did not though. Even went to a GI doctor and he didn’t feel it was an intolerant issue. After many conversations about this with my sister and Courtney’s feeding therapist, I was encouraged to try lactose free milk. So…to the doctor who convinced me Courtney isn’t lactose intolerant…you were wrong! Omg, Just after 2 weeks, the difference in how her belly looks at the end of the day is amazing. I only wish I stuck with my gut feeling when she was a year old.

Tug at the heart…

As it goes with raising a child, there are days where they just tug at your heart. Wether they are happy tugs or heart breaking tugs, children just have their way of grabbing a hold of it and tugging and tugging hard. They are so good at doing this, I’m sure there are days where it happens several times. There have been a lot of tugs recently. Some very happy and some heart breaking. I find the heart breaking ones tough right now because it usually has to do with Courtney being unhappy about something, her unable to tell me and me unable to help her.

As I’ve said before, Courtney is non-verbal. She also has very poor receptive language. So not only is she unable to express her wants and needs but she is unable to truly process nor understand language. So the last three nights when putting her to bed she has suddenly starting crying inconsolably.  Yes she’s a toddler and this can happen with all toddlers. And I also understand that when a toddler does this, they sometimes are unable to tell you why they are crying even though they have the words. But with most toddlers, once you go through all your bag of tricks, you may eventually be able to find out what is wrong or maybe even just convince them to stop crying. With Courtney and other children that have significant language delays on top of social/emotional delays, it takes so much more. You can’t help but feel completely helpless. The past 3 nights I have ended up choosing just to hold her and let her cry herself to sleep. It is so heart tugging to watch the tears flow. Courtney hates her face getting wet so as the tears flow she is wiping her face like crazy. I find myself trying to wipe those tears as fast as they fall just so the tears don’t upset her more.

We are in the process of hiring a nanny for the coming school year. The nanny we interviewed today asked the question that many parents asked me as a teacher about their child, “so is she going to eventually be able to speak?”. Because of my back ground, I know that question can’t be answered. It’s too early to say she won’t every talk, but I can’t confidently say she will.

We hope in the coming year to find a way to help her communicate with us whether it be with pictures, sign language, or a device. Thanks to technology advancement, there are a great deal of options! We’ve also been given the opportunity to have her part of a study. Tomorrow her and I are headed to Northwestern University where we will learn about a study that her and I can be a part of. It’s a study that will look at the effects two different strategies have on language development. If we choose to follow through with this, for two months a therapist will be coming to work with her.

So yes, watching her communication breakdowns are very heartbreaking, but I also have to be thankful that there opportunities out there for her to hopefully give her the tools that she needs to let us know her wants and needs.

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!