Drive by?

 We have started early this year!

Every year leading up to the fall fair Chelsea asks me to “drive by” every time we get in the vehicle to see what progress is being made towards setting up for the Fall fair. It usually doesn’t start till late June or early July, but this year it has started already. I’m not sure if it was because she was having a bad day and needed something to cheer her up, something to look forward to.. but here we go.
Some of you might say, “ well just say no.” I could but does it really matter? I live really close to the fair grounds anyway. It’s something that gives her pleasure.

I’ve had to learn that regardless of what anyone else thinks or says, I pick my battles and I choose what those are. Like going to the fair EVERY SINGLE DAY…. but she loves it and it’s the one big thing she looks forward to. Thankfully she doesn’t insist I go on every ride with her anymore. She has her two or three favourites and is happy if one of her nieces or nephews will ride on it with her. I used to have to carry a bottle of peppermint with me just to avoid the nausea.
 Another one of those battles I have chosen not to fight is having her sit at the table with us for meals. You see I had to make a hard choice to either have family over for meals or fight this battle.
Several years ago her anxiety was so much that she would often become aggressive and act out, throwing things or hitting people if they were too close. Sadly she hit some of my grandkids when they were really young too. Sitting at a table in such close proximity is just too much for her and I couldn’t put young children in harms way. She is very happy to sit off on her own where she can see what’s going on and hear the conversation. Maybe one day we’ll get there but for now it’s ok.

 Speaking of hearing what’s going on … if she’s taking a bath she has to have the door just a crack open because you know … someone might say something interesting. She does love to eavesdrop and doesn’t miss a thing! I have to be so careful what I say! But not just what I say! She reads minds!!! Just kidding, but not really. Seriously sometimes I do think she reads minds. Like the time I was thinking about what to have for dinner and thought maybe getting Chinese food would be good. I purposely never said anything out loud. Not even a minute after I thought it she walks into the room and says, “ Chinese food?” Honestly, I try to control my thoughts around her because it seems we are so in sync!

 She has many funny/ not so funny quirks. Some she has grown out of and some have evolved and keep changing.
I remember when she HAD to have the toilet seat closed and the bathroom door open. Some kids thought it was funny and would purposely change it just to watch her squirm and go back to fix it. She HAD to have the rear view mirror thingy ( you know … that little knob that tilts it so you have night vision?) left tilted a certain direction. One night she actually got back up out of bed and went outside and changed it because she just couldn’t go to sleep knowing it was the wrong way.

 She has phrases she will repeat over and over . Those have changed over the years and become less frequent and at least now we actually understand what she’s saying. - which reminds me of a sad story. When she was about 4 years old she kept asking me for something. I didn’t understand what she was trying to say. I’d guess and she’d shake her head no. I asked her to show me and she took me to the fridge but I still couldn’t figure it out. Finally she got frustrated and just quit. The next day I realized we had some left over chicken wings and she was trying to say “chicken”. It still makes me sad - but I digress…

 She just can’t stand to have a perfectly tidy room. No, I’m not talking about a typical teenager messy room. It can be all near and tidy and she just HAS to tuck some clothes behind the dresser or bed or in the corner. She will take some out of the dresser just to tuck behind something or in a corner.

 Like I said, we pick our battles. As parents we all decide what we can live with and what things are important enough for us to battle. The most important thing for me is her happiness and enjoyment of life. While there are times I will stand my ground, I try to ask myself “ how important is this really?”

All Things Work Together for Good

 

Pretty well every weekend Chelsea comes home to stay. Once in a while we want to go camping or take a weekend trip somewhere and it disrupts her schedule. She is an extreme creature of habit! She always knows what day and month it is and always needs to know what comes next. Every Monday morning when I drop her off she will say, “Wednesday night supper?” and then “Friday sleep over?”

 

So sometimes it’s good to disrupt the schedule so that when it’s needed it isn’t too hard on her. A couple of months back we decided to do just that, and I told her that I was going to be busy on the weekend and that she would be staying home (at the group home) for that weekend. Of course, her dad often picks her up for dinner or overnight too, as he did on this particular weekend.

It had been way too long since we had been to church - what with Covid and also even before that we didn’t go often because if Chelsea came with us she would just lock herself in the bathroom the whole time, plus we would need to take two vehicles because she wouldn’t ride in a vehicle with my husband and I together. – so this weekend we decided it would be the perfect opportunity to go to church. We had been wanting to try out the church 20 minutes out of town in the little village of Rolla.

 Sunday morning came and it was snowing. Chelsea’s dad texted me and asked if he could drop Chelsea off with me for a couple hours so he could plow snow. I told him I had plans and that he could just take her back to the group home. We got ready and went to church. As we are pulling into the church parking lot Chelsea and her dad pull up. (I guess he didn’t have to plow until the afternoon)

Chelsea wanted to sit close to me so I pulled a chair over where she could be close but still have lots of her own space. She did really well that first Sunday. No meltdowns. No locking herself in the bathroom.

 The following Wednesday evening when I picked her up for dinner I said, “wasn’t that a nice church? That’s where we are going now.” And so the precedence was set! That was it! Now we had to go! We couldn’t wait a week or skip a week. Otherwise Chelsea would think, “well maybe we won’t go. We didn’t go last time.”

 Sunday morning I woke her up and told her, “we are going to church, but you don’t have to

come. You can go back to the group home until church is over or you can go with dad.” Immediately she said, “Dad!” I could see she was not in a good mood and very stressed, but I went about getting ready and just let her process everything on her own. About 20 minutes later she quietly says, “come with you?” I said, “Of course you can.”

 I was shocked at how well things went. There were no signs of anger or stress for the whole 20 minute drive and as we pulled into the parking lot she giggled and said, “out for lunch after?” Ummmm ….. No! I’m not quite ready for that yet. You see I have anxiety from past trauma too. We have had many incidents of throwing things and hitting and restraining that were really not pretty and have left a lot of trauma. Anyway, she did so amazing that first Sunday. Remember how I said the precedence was set? That means we have to go! Every Sunday. If we skip one she will think we can do it again and the battle will start again. Most Sundays she has still not enjoyed the idea of going but has gone with no incidents or tantrums. Until this past Sunday. She got up and put on “Sunday clothes” and didn’t even try to suggest that we not go!

I expect we will still have some rocky Sunday mornings but a huge hurdle has passed. However, it’s not just that we can now take her to church. We also get to take her on a 20 minute drive every Sunday each way! There’s a huge back story to the whole driving in a vehicle thing and maybe I’ll do a separate blog just for that, but for now I am rejoicing in how all of the circumstances turned out just how they should.

How Dare She!

I remember the first time a friend of mine suggested that I look at putting my daughter in a group home. My gut reaction was anger.  How could she even say that? I would never abandon my daughter! (because that’s what it felt like to me.) Giving up on her and abandoning her. Of course I never said that to her and pretended like I thought it might be a plausible idea.

 

 I can’t remember if at that point she was already doing respite in a local group home, but if not she did start shortly after that just to give me a break. She enjoyed going there because her best friend also lived there. Although the transition of sleeping in a room that wasn’t right across from mom was hard and sometimes they would let her sleep on the couch so that staff was close by.  

Chelsea nad her best friend

 The respite wasn’t really enough though. I was still responsible for her 24/7. My life revolved around her and keeping her anxiety at bay. Making sure she had the space she needed and that no one got in her space. Respite didn’t happen that often and she wasn’t getting enough help from outside support systems. So I wrote a very heart-felt letter to the powers at be and expressed my frustrations. In the meantime her best friend had also passed away so I had avoided doing any respite in that home as Chelsea was completely devastated.

 

A couple of months went by and out of the blue I got a phone call telling me that there was a permanent space for Chelsea if I wanted it. It literally took my breath away! I could barely speak. My mind was a blur. I told them I would need time to process and get back to them. The thing that made it even harder was the space she was filling was the one made by her friend who had passed away. I thought, “there’s just no way!” No way will she want to be in that home now. She will be far too upset for this placement to work out.

 

 The alternative to the group home was going to be me running a program for her in a home that we would build. I would be responsible for hiring, firing, payroll and everything else in between. Quite honestly this seemed completely overwhelming. We agreed that we would take the space being offered and give it a try. We would transition very slowly to see if she would be comfortable there and see how things would work out.

 

The first time she stayed for an extended period of one week I was so anxious because I imagined her not sleeping much and asking nonstop when I would be coming to get her. Then there’s that moment that you realize your “little girl” may finally be gaining her independence.

All of the emotions that can flood a mama’s heart in one moment, all at once. Shock, love, sadness, anxiety, Joy …. And so much more!

 

When we got home after the week away I get the phone call. Expecting to hear “You come pick me up?” I hear, “I no go home.”

Say WHAT ??!!??

 

My response of course… “OK!!!”

It hasn’t always been like that day. There have been hard times on both mom and daughter. There have been a lot of emotions, some resistance, some great times, and some not so great, but she is doing so well in her home with her friends who she now calls her “sisters”.

 

She still comes home every weekend almost and midweek once for dinner, but life is so much better in so many ways.

I’ll share more about those “many ways” in a future blog. …. Stay tuned.