In just one day...

In just one hour, our life changed again. There was before I knew, and now there's the fact that I know.

I know that my youngest is on the Spectrum. I knew when the doctor wanted to first talk about the positive aspects of the testing. I knew when she didn't come right out and say it's not Autism. Heck, I knew it when I spoke with her on the phone and should have realized it when she dropped the hints. I should have known it now because I knew something was off years ago. I just couldn't fathom that we'd be the 2 kids on the Spectrum family. Surely God would spare us that.

I know that now we need to go down the rabbit-hole of social groups, books, and therapies again. I know that I will always know this information - I can't un-know it. I also know it will effect each and every decision I make from now on for her. I know I've spent years hating Autism for what it took from my son - at least what I imagined it took from my son. Now I know that the very thing I have been hating all of this time has been what makes my other child so special. God truly has a sense of humor. I don't say that with the bitterness it may communicate though - I truly think He is trying to show me that Autism isn't necessarily the big bad boogeyman I've let it be in my life.

When I told my bosses at work today, they prayed for me and our family. Prayed the blessing that God has truly made us unique individuals crafted by Him. They prayed a blessing on her and reminded me how special she is and how loved she is. So now I also know that God is God even when it's Autism.

I also know that the experts tell parents that they need to grieve when they get the diagnosis. I've been down this road before and I get it, but I'll do it again because what else can I do? I'll grieve the safe, little, life I constructed for her, and will eventually be ok with the fact that it may not be what I envision. I'm not there yet though. Heck, I don't know if I'm there for my son and it's been almost 10 years now. But here's another thing I know, life goes on whether you are ready for it to or not. Yes, I am upset. I'm scared and I'm angry - angry that this happened to my family again and angry that I didn't let myself see it sooner. I was so glad that she didn't present like he did, that I quickly told myself that we dodged that bullet again. I'm angry that I'm angry because what gives us the right to think our lives will be trouble free? I tell my oldest all the time that we all have stuff to deal with - every one of us. No one is immune to the pain of life. But, couldn't we have been spared this one again? What I really hate is that when I look at her now, I see the label. I put her to bed one night and she was my little girl. The next night, she was still my girl, but now I see the specter of Autism hanging over her head.

Now we have to make the bigger decisions. Do we tell her? When do we tell her? Will she see it as a special gift that she has, or will she dislike herself because of it? How do I find God in the midst of the diagnosis? Will He make provision for even her? and him? Will they both be ok? Will their secret hopes and dreams come true, or will they be shattered into little pieces. But then again, what parent doesn't wonder about those things for each of their children?

So now we know.

road trip adventures - part 8

Well, we stayed in Chattanooga for an extra day and still barely scratched the surface of all the things that there are to do up there. I'd definitely go back for a visit. We made a morning trip to Ruby Falls which I have fond memories of as a child when we made a road trip from Louisiana to Massachusetts.

After the falls, we got back to the camper and packed up to come home. It was around 1:15 when we got on the road. Harry decided to take the "scenic" route home through the mountains and I ended up VERY car sick by the time we got to the NC/TN border. By the time we were outside of Asheville, I was really sick and it kept going until we got home (which was around 11:30 pm).

We've spent the yesterday cleaning out the camper to return to our friends before they hit the road for their own adventure. We are so grateful to them for loaning it to us for such a long time.

So, would I do this again? I enjoyed making the memories we did with the kids and I'm so glad we got to see all and do all of the things we did. I'm not sure about doing this in a camper again. The space was tight for me and I was pretty claustrophobic by the end of the trip. Having said that, I'm glad we took the chance and did this. One thing is for sure, it's not something we'll forget anytime soon!

road trip adventures - part 7

Our trip down to San Antonio had some challenges, but I'm glad we went anyway. We did "see" The Alamo, but we didn't actually go to The Alamo. Like I said, we had some challenges. It's really cool to see though - it's right in the middle of downtown and all of these new building are built all around it.

We went to the Riverwalk and walked (a lot) and took a boat tour which was neat. The tour guide was really good and he made the trip interesting. Did you know that there are lemon, orange, and avocado trees growing all around there? He said it best when he said people don't bother to look up!

On the Riverwalk

The highlight of the trip was when we went tubing on the Comal river. Not only did the 5 of us go, but Harry insisted on bringing the dog. I told him that he is officially a hipster because that's a very hipster thing to do. All of the things I was worried about happened: the family got separated at one point, the dog kept wanting to jump out of the tube, I fell in the river off my tube, and little Harry complained pretty much the whole time (because we didn't know *exactly* where the exit would be). All that being said though, it was an adventure.

We rolled back to Bubby's house on Wednesday evening. She took Harry W. to the doctor for a follow-up this week. His CT scan is clear and they are stopping one of his medications because they are trying to determine if he has Parkinson's or if the symptoms are a side-effect of a medication he's taking. The concern is that without this medication, he may stop eating again, so if he does, they will try a different one to get him eating again. He's also recovering from a UTI which could also be causing some of his disorientation and confusion. He's also lost 3 pounds in the last few weeks which doesn't sound like much, but it's something like 3% of his body weight right now. Friday he had lunch with us so we could see him one more time before we started the journey back home.

Ready for the journey home!

It's Saturday night now and we've driven about 1/3 of the way home - because it's a long way from Texas and we can only go about 55 mph. We're in Hot Springs, Arkansas for the night. We went to a national park that had this great spring-fed river and after some coaxing, all of the kids enjoyed themselves. Tomorrow, we'll head to Chattanooga for a night or two, then we'll finally be home.

road trip adventures - part 6

Father's Day was yesterday, so let me run down the cast of characters for you since it can be a little confusing with 3 different Harrys in the family.

Harry W - Harry's dad, grandpa
Carol - Bubby (grandmother), wife of Harry W, Harry T's step-mother
Kendra - Carol's daughter, Harry T's step-sister, aunt to my kids
Stan - Kendra's husband, uncle to my kids
Marilynn - Kendra's daughter, our niece, cousin to the kids
Harry T - my Harry
Harry B - "little" Harry
AK and Abbey - our girls
Eve - dog who is sometimes a jerk  :)

3 generations of Harrys!

We had a good Father's Day with Harry W, Harry T, and Stan. We all went to Harry W's favorite restaurant for lunch. He was still a little less "present" than we were hoping for, but he managed to make it out and for that we were grateful.

At my end of the table, I got to visit with Kendra and Stan which was fun. They have hosted us at their house a lot over the last few days and we are so grateful to them! Kendra and Stan got married about 4 years ago, so this was the first chance we'd had to meet him and get to know him. Anna Kate was taken with him - and made him an impromptu finger puppet while we were waiting. Both he and Kendra made efforts to really try to get to know each of our kids during this visit. In turn, we got to reconnect with our niece Marilynn which was fun for us. She is having her Bat Mitzvah a little over a year from now and we are planning to try to make it back down here for that. I've never been to one, so I'm excited to be able to be a part of it.

After lunch we took Harry B on a train ride. It's like the little train at Pullen Park, but it runs for about 20 minutes in each direction. The tracks take you over the Trinity River, under a train bridge, and through a park. Harry loved it, but for once was ready for it to be over when we got back to the station.

train selfie - note Abbey's adorable haircut!

In the afternoon, Harry T and Abbey spent time washing the camper - his choice on Father's Day - not mine! Later on, he brought his dad an updated computer so he can surf the web at the facility he's staying at. He's tried to help make his space a little more "homey" for Harry W this week and has gotten him set-up with a cable TV as well. 

The kids have spent entirely too much time on the computer over the last week, but I figure it's ok because once we hit the road again, that opportunity will end. Carol has made this leg of the trip so easy for us. I was very worried about how it would be for her having all of us and the dog in her space, but she's been very gracious and genuinely doesn't mind having us around. Even Eve has been behaving herself - mostly. She did run away yesterday, but it was only for 5 minutes. 

We hit the road today for San Antonio, so if you have a favorite spot down there we must see, let me know! I found what appears to be a nice hotel that takes dogs, so we'll see how that goes. We have the Alamo and the Riverwalk on our list of must see items. I just can't remember if Harry B's history class covered any of the Alamo or not. By the end of the year, he was studying his history on his own so, he'll either be seeing what he studied, or he'll be getting a preview of what he will study next year.

I still don't know where we are going when we get back to Fort Worth. Harry and I need to talk it through since he wants to check the elevation in some of the places we've talked about going. Time is ticking by so quickly and soon it'll be time to head back to NC.

road trip adventures - part 5

We hit the ground running when we got to Texas - after we got through the traffic. Oh my goodness was it awful between Dallas and Ft. Worth. The freeways here are a nightmare. I can't fathom driving around here every day. I've become spoiled by the "traffic" in Pittsboro.

When we pulled in, Harry navigated the camper into the RV shelter (like a pro!) and we immediately unloaded. Poor Bubby - we barely said hello! We were rushing because we were trying to get everyone showered (it had been a while y'all), and over to see Grandpa for dinner. We made it and got to visit with him.

Harry's dad is not doing well. After we brought him back to the facility he's staying at, Bubby told us that he has a type of dementia which was new information for us. He is eating again, has gained some weight, and is taking his medications; but, he has motor planning issues and needs a level of care that he can't get at home. Carol (Bubby) has done a lot to get him help and I admire how she's handled everything. The fact remains though that he will not be able to come home - ever.

We've been seeing him mainly in the afternoons and he's pretty wiped out by the time we see him so he's not very engaged. Harry went in the morning yesterday and he was a little more alert. For father's day, we're taking him to lunch at his favorite place, so we're hoping he'll be more alert and able to enjoy the company. My Harry has enjoyed the chance to see him and help out with practical things at the house for Carol.

We've kept ourselves busy helping Carol with things around the house and getting things set up for Harry at the facility. Other than that, we've spent a lot of time reconnecting with Harry's step-sister and her family. The kids have enjoyed getting to see their cousin and it's been good to catch up with her instead of hearing the stories second-hand from Carol. Today we're pausing to take a breath and maybe Harry and I will get a chance to go out without the kids tonight.

Looking ahead, we are thinking about taking a few days to go to San Antonio. Harry did some math and decided it'd be cheaper for us to stay in a hotel for a few days than to pay for the gas and a trailer spot to get down there. We literally have doubled our expected gas bill hauling the trailer.

Our plan to head to the southwest has been nixed. With the record heat and amount of time it would take, we decided to focus on heading east again. I'm lobbying for a spot in Tennessee, but he wants to check the elevation and see if he thinks the van can make the climb while hauling the trailer.

I'd be lying if I said I wasn't missing being at home, but I am glad we are making this trip. Things haven't gone the way we always planned, but the kids (and I) have been pushed out of their comfort zone. There's plenty of summer left for them to do nothing and for me to prep for my new teaching role in the fall when we get back. I even left my copy of The Seven Laws of Teaching at home Larry!

road trip adventures - part 4

The last few days have been full. We went to the aquarium and I got my mommy slushy while the kids had ice cream.

Garden Eels

Mommy "slushy"

The next day, we headed to Legoland for the last time. Abbey rode a roller coaster and the kids got to see a few shows that they enjoyed, but our run of peace with Harry ended. While we were waiting for Harry and Abbey to come off the roller coaster, he saw dark clouds and immediately became worried. I showed him the weather, but it didn't help. He just wanted to go, but that meltdown was nothing compared to the one that was coming.

Saturday morning, while we were packing up the van, the jerk dog made her escape. For those of you that don't know the story, we had Eve chipped just in case this happened, but Harry refuses to pay the $20 to activate said chip unless she's gone for more than 6 hours. Luckily, we got her back before we had to go that far.

As we headed to the next campground, we decided to stop off at Silver Springs State Park. They offer glass bottom boat rides which I thought would be fun to try. Well, little Harry was none too pleased with this change in plans. It was a mess, He was crying and fussing and refusing to do anything. Harry stayed with him through most of it while I took the girls on the boat. While we were waiting, I took some time to talk to the girls about how they were processing the meltdown. Harry and Harry finally reached a point where he was calm, everyone ended up with ice cream, and it was ok.

We hit the road again and then a migraine struck. Can I just say how messed up it is when you are trapped in a car with a raging pain in your head and a stomach that feels like you've been on a Tilt-a-Whirl machine? For 7 hours??? Needless to say, we got to the campground after dark and had a heck of a time finding our spot. A helpful lady came along and pointed out that someone had parked their truck in our spot, so she went and woke him up! He came out, moved the truck, and helped us get pulled into the spot. While it's billed as a pull-through spot, it took some maneuvering to get that to happen. Oh, and we crossed into the central time zone, so it felt like it was 10:30, but it was really only 9:30. This was definitely not a party campground. Most of the trailer lights were off when we rolled in.

The campground seems nice and it's a just a few minutes walk to Perdido Bay. Harry took the kids (I am still recovering from the migraine), but little Harry came back pretty quickly. He said it was too sandy, so I convinced him to try the pool. When he wanted to get out within minutes, I asked him what was wrong. He nodded at the clouds building overhead and asked me if there was going to be a tornado which is a pretty typical anxiety reaction from him. We headed back to the trailer and it's been thundering off and on since. Hopefully, the weather will clear for us to enjoy a proper campfire tonight complete with marshmallows for s'mores.

We pull up stakes tomorrow. Theoretically, we are stopping for the night between Monroe and Shreveport LA because are trying to get to Texas by Tuesday night. I say theoretically because a few minutes ago, Harry started talking about pushing through to Texas tomorrow. With the slow speed we go (maximum of 60 MPH) and the multiple stops we have to make for gas and the dog, we are looking at about 14 or 15 hours on the road.

Here are some photos of the camper. I apologize for the stuff everywhere, but I haven't figured out how to live out of the camper and a home within a day or two of each other. We all packed a week's worth of clothes, but I can't justify unpacking a suitcase only to pack it back up again in a day or two.

Tiny but useful bathroom. Harry has resisted us using the "facilities" because he doesn't want to pump it out.

The "kitchen" with a good sized fridge (it holds a gallon of milk and all kinds of other stuff).

Abbey's bed. It's in a little hidey hole and she likes the privacy.

Harry and Anna Kate's bed (directly across from the fridge).

View from front of trailer by the table.

The dining area which converts into another bed that Anna Kate will be using tonight.

our bed - it's directly behind the cushions for the table.

I have to admit I am a little nervous about the Texas portion of the trip. Harry's dad is still in an assisted living facility. We're going to try visiting him there and see if they'll let us take him out for a few hours at a time. I'm not sure how the kids will react to seeing him there. Depending on how it goes, Harry may need to visit him without all of us in tow. 

We're staying with Harry's step-mom (known as Bubby to the kids) which we haven't done before. Last time they visited us, I think the chaos that is our home overwhelmed them both and I'm concerned that we'll be a burden to her. We offered to stay elsewhere, but she insists we come and her home actually has an RV shelter. It'll be good to see Harry's family though. He just saw them a few months ago, but it's been years since I've seen them.

I have been pushed way outside of my comfort zone on this trip. Travelling with the dog, camping in a trailer, reconnecting with family we haven't seen in a while, etc. I am missing my quiet, predictable life in NC, but hopefully, I am setting a good example for the kids. Overall, they seem to be doing well and enjoying themselves (with the exception of poor little Harry when the weather starts to roll in). We've been playing a lot of games and trying to find things to do that each child will enjoy, Sometimes it works, sometimes it doesn't, but at least we're trying.

road trip adventures - part 3

Yesterday, we laid low because the weather was pretty bad. Surprisingly, little Harry has been handling the weather situation fairly well. There have been a few tense moments with him, but all told, he's been managing his anxiety pretty well which is a small victory for all of us!

Yesterday we played a lot of games, mostly "Apples to Apples". Abbey devised a way for the dog to play and she almost beat all of us. Thankfully, the dog has settled in at Aunt Donna's and has been behaving very well.

Today we managed to hit the water park at Legoland before the rain moved in. This time, instead of just telling Harry not to worry, we showed him the weather app with an hour by hour forecast so he could see that the rain would be a few hours off. Thanks to his internal clock, he was able to have fun and only started asking to leave about 30 minutes before the chance of rain increased. This is life with an anxious/ASD kid. It's always a fine balance between pushing them past their comfort zone and still giving them some structure to help them through.

Aunt Donna left today for Vancouver to teach some classes, so we are basically squatting in her home until we leave for our next stop on the way to Texas. We're supposed to camp for a few nights in the Pensacola area and yes, we have reservations. That's not an experience any of us wants to relive anytime soon!

I've decided tomorrow is aquarium day. The boys may stay behind, but the girls and I are looking forward to some garden eels. There's a little downtown area nearby with a daiquiri shop that we may need to visit as well. Hey, mommy needs a slushie now and then too!