Mostly Wordless Wednesday

I’m a little late posting today….had to edit these photos…but wanted to share from our zoo trip the other day. Adorable, right??

 

Crushing

Tate has a crush. He has had little crushes on girls on the past, but this is full-blown. It started last week. He kept saying that he wanted “A” to come to our house. On Thursday,  his aide reported that he was trying to hold her hand. All day. 

Yesterday we were on a field trip with his class. I was able to observe Tate, aka, My Little Casanova, all day long. He and “A” held hands as we waited to board the bus. He tried to sit with her, but then mean old Mom came and made him sit with her! (I am awful, huh?!) 

Once at the zoo, Tate held “A”‘s hand again. They walked hand-in-hand through the entrance and then up to the pachyderm house. By that point, we could feel the heat from the day starting to set in. “A” pulled her hand from Tate’s. He tried to grab it. She turned and put her back to Tate. The aides stepped in and asked her to use words to tell him, because he might not understand. “A” told Tate that his hand was “too hot” and she didn’t want to hold it. Tate pouted. But he did refrain from holding her hand.

We walked our way through the hoofed animals, and made our way to the Bear/Bison area. We attempted to get a group picture in front of the bison. Tate made his move. He grasped “A”‘s hand in his. She held on momentarily, before shaking him loose, again. He tried to grab it, and she said, “No, Tate.” He started for her hand, again, and I said, “Tate, respect her words.” He listened and backed off.

As the day went on, Tate still wanted “A” to hold his hand, but he was feeling uncomfortable due to the heat, too. He started patting her hair instead. I stepped in, once, to correct him, but noticed that she didn’t mind his gentle gesture at all. So I let him pat her head as needed, and she was also allowing his pats to continue. 

On the bus ride home, Tate asked 5 times, “I have “A” come to my house. Ok, Mom?” I told him we would invite “A” to our house. 

So, um, yeah…my kid, my autistic son who “doesn’t have a strong sense of connection to peers”…well, guess what? He is totally crushing on a little girl his age right now. And I am on cloud nine. I love that he is seeking out the attention of someone his age..and is quite appropriately doing so. Good things do come in time….

Honoring #MikaelaLynch

I have to post tonight, as I am going on a field trip with my autistic son and the 5 other kiddoes in his special needs class tomorrow. We are going to the zoo with the rest of our school’s first graders. A big, huge, open zoo. We have been to this zoo numerous times as a family. But he has never gone with school. And the thought of him there without me freaks me out. Big time.

Tate has not, to this point, been a wanderer or an eloper. He follows our rules about staying in the house and in the yard. He stays with adults and likes being part of a group. We make sure to keep doors and windows locked. We have established rules about leaving the house. To this point, he has not had an interest in getting outside without asking us. We are lucky. We are blessed. He’s verbal and often will ask to go outside. He has always asked us before leaving the house. Always. And, our lovely child, thanks be to God, often comes looking for us when he can’t see us.

When we are out in public places, though, we have had moments where he wanders just slightly ahead of us. He is autistic. When his attention is captivated by a desired object like a fan or running water (I know!!), he may not answer when we call his name. The allure of his beloved stimmies is more of a draw than the sound of his parents’ voices. Or his brothers’. Or a relative. Or a good family friend. Or a teacher. Like many autistics, he doesn’t have the same sense of fear or executive function to know that he is in danger. He knows that something makes him calm/happy/regulated, and he will seek it.

Most of the time when Tate wanders slightly ahead of us, he turns it into a chase game.  If I shout his name, he turns to me and smiles. If I run after him, he runs faster, or goes in the opposite direction. We have been fortunate that when these situations arise, we are either able to get to him in time to keep him safe, or we are beneficiaries of the kindness of a stranger.

I was shocked and saddened last week by the loss of Mikaela Lynch. That baby could have been my baby. Tate loves water. All by his lonesome, he would have seen the water and felt excited. The water would have been a draw…the noise would calm him if he was at all upset. And…and…I get all choked up when I think about what happened. That could have been Tate. So, as the Lynch family mourns, and tries to pick up the pieces, they came under attack. The harsh criticism of their parenting during their tragedy is awful. Just. Awful.

Instead of judging her parents, who are grieving right now, show them support. Let them know that we can’t even imagine what pain they are enduring. That we know just how close to the brink we all are every day to having a similar story. The Lynch family and their community are in my prayers. I pray that they find some solace and comfort during their time of profound grief and loss.

Please, if you have autistic children, or know someone who does, look into resources that can help you keep them safe. I know we are re-evaluating our safety plans for our son. And we will be talking with neighbors, as well. Especially the ones who own pools that are not protected by fences or gates, now that summer seems to have arrived.

 

 

In the Rough

In golf, when one hits the ball into the higher, more scraggly grass, he or she is said to be “in the rough”. Lately, I feel like we are all “in the rough” around here…and no matter how hard I work or concentrate or strategize, we just can’t get out. I see the desired fairway…and the short, straightforward putting green, but I just can’t get there.

Jake is struggling at school. For once, it isn’t his academics. Rather, his anxiety is reaching new levels. He is thrown for a loop when any little thing changes. His rigidity is worse than Tate’s right now. If activities or quizzes or classes don’t happen in their expected routine, he shuts down. He requires time, more time than is allotted, to regroup and press forward. This does not bode well for 4th grade.

I know that there have been discussions by his IEP team and principal as to whether or not he should be placed in an “instructional” classroom. Thankfully the team and Hubz and I agree that he should NOT be in the “instructional” class. He needs the regular education classroom. The principal agreed to keep him in regular education. Instead, we are increasing his resource room minutes next year. Some of those minutes will be in his regular education classroom, but with “push-in” from the resource teacher for additional support. 

The thought is that Jake’s IEP is updated in October. After about 6 weeks of school under his belt, we will be able to see how the increased minutes are working. If he’s managing his anxiety better, we can reduce them. If they are still needed, we will keep them in the IEP. But, for now, we have his amendment with the additional minutes. 

I am staring to think that rather than giving him “time off” during summer, I need to find a good psychologist or therapist that he can work with to devise some good plans for coping with his stress and worries. It breaks my heart to see him like this. He is more aware of his disparity with his peers…and I see it affecting his self esteem. 

Tate is struggling with the impending transitions, as well. He’s definitely more able to go with the flow of our mixed-up schedule than he used to be, which is helpful. However, he’s exhibiting more behavior that is not what we’d like to see. The “poop” talk is reaching a crescendo. I know I’m supposed to ignore it…but holy moly, I am about to lose it. I am so tired of him working that word into every. single. sentence. (And script. And story. And..everything.) I am really not sure where to go with his “poop” talk. 

My other frustration really is not even Tate’s issue… I mean, it is, but it isn’t. See, the director of our ABA team (and she’s the owner)  does not think Tate should go to ESY this year. I respect her opinion, but I think that going to ESY will be good for him academically, socially, and will help with the continuity of school.  I see more benefits to going than not. And I am his mom and his main advocate. End of story.

Anyway, she said she’d work with the schedule. The main plan was to send him 2 days a week, rather than 4 for the 6 week program. We still don’t have a summer schedule. I submitted my plans in late March/early April…even before we got notice that insurance was going to continue to cover Tate’s ABA after his 7th birthday. Insurance came through…the provider has not.

His current therapists are keeping their same days and hours. They work afternoons. We have 5 mornings that a third, new therapist can choose from in the schedule. I have not heard one word. Not one–from the provider. The other therapists were told that there was going to be a new third therapist. I was told the same. None of us have seen anything or heard anything. When I ask for answers, I get crickets. CRICKETS, people! Chirp, chirp. Chirp, chirp. 

Today I sent an ultimatum. Give me schedule info, or I’m sending Tate to 4 days of ESY..and I expect a provider on the days that he is not in ESY. I gave her all of those days. We will see what happens. Also? While I have been dragging my feet on finding a new ABA provider…this is proving to me that I need to do it…no matter how uncomfortable this makes me feel. Ugh. 

So, I am lining up my shot…and trying to get out of the rough. Hopefully I’ll get to that nice, lush, flat, smooth-sailing place soon. 

Mostly Wordless Wednesday

Look at the fans, Mom…

Last night Tate made it through his first elementary school music concert. It wasn’t flawless. In fact, there were 2 moments where I was ready to bail. First, there were a lot of people. And it was hot. And anxiety-producing. As Tate wailed and scripted “YOU STINK” a little too loudly, I sat down next to him on the stage (oh yes, I did) and asked if he needed to go. He asked me to go sit back in my seat, and I did. The second time, babies. Two different babies started to cry and fuss. It made Tate visibly shudder. His aide went to his side and asked about needing a break.  Tate asked her to go sit back down. Tate was determined to get through the entire show. And. He. Did. (He pushed through the anxiety and assaults on his senses and watched fans as he sang and danced.)

My son continues to amaze and inspire me…and reminds me that we cannot give up when things get difficult…we need to power through and adapt.

End of Year Anxiety

The anxiety beast is running rampant through our house right now. With 3 weeks and one hour of school in front of my boys, there is a complete sense of the unknown in front of us. Jake feels it. Tate feels it. I feel it…both mine and theirs.

I remember being in a state of immense joy when school was almost over for the summer. No more teachers, no more books…no more principal’s dirty looks….and all that jazz. Except for my kids. The end of the school year means change. And change, well, change means anxiety. Lots of it. 

Tate has several little transitions to get through as we approach summer. First, his teacher is out of school right now after a medical  procedure. She returns next week. He has her for 2 weeks, then, and then has a week break, and then starts up ESY part-time. He also will have ABA in the afternoons…and most likely a new therapist on weekday mornings to fill the session times that his afternoon therapists cannot manage. He’s been sleeping like a baby…like a newborn baby. Up a lot, whining, crying…it’s been exhausting.

As the school year winds down, items are coming off of walls, expected wall adornments are put away for the summer, and everywhere one walks, there’s a sense of moving on, of routine change and the like. Tate has been scripting about his aide “breaking” his schedule. Turns out, she was helping to clear some of the posters and his visual schedule ripped. *sigh* (She put it back together…thankfully she knows how much he relies on it!!)

Jake is having the most anxiety about his teacher for fourth grade. He keeps asking his third grade teacher to be his fourth grade one. While sweet, it shows how anxious he is about the change. Thankfully, though, he will get to meet his new teacher before the end of the year so that we can visit her classroom a few times over the summer. He keeps asking what happens next. I can only go over the next few weeks so many times before I get short with him and lose my temper. Then I feel guilty…until he asks me, yet again, what comes next.

I am anxious about how the change in routine from school, to summer (for a week), to summer school, to ESY, to day camp, to therapy, to play dates, to random summer activities will go. I am not as rigid as my children, but the changes in routine make me a little nervous, too. I like to know what’s coming…and, well, one never quite knows..especially when children are involved.

So, we’re trying to muddle along over the next couple of weeks…none of which is really a typical week. This week the boys have Friday off for an inservice day. Next Wednesday they have early release. The following Monday is Memorial Day, and the last week they have a full day of school on Monday and our obligatory hour on Tuesday. 

Throw in a handful of end-of-the year activities like field trips (for both of my older two boys), a spring music concert for Tate (still not sure if we should go), Jake’s bridging ceremony for Cub Scouts (Webelo’s here we come!!) and we’re all out of whack. 

Maybe it’s time I start doing yoga again…I feel my blood pressure rising, my heart rate increasing, and my breathing race as I start to think about all that’s coming our way in the next 4 weeks….eeek!!!

 

Mostly Wordless Wednesday-Spring Version

Lacrosse has started again. Jake is in white–the third from the right. It has been encouraging to watch him blossom on the field this year.

With our late spring weather, Cole and I have taken advantage of our time together to visit the parks around our neighborhood. He loves shuffling along the woodchips to make paths.

Tate has started playing with the hose. If we let him, and if we could afford it, he’d be out there all day with the hose, a few bricks, and some other water toys.

Yesterday was fabulous. I decided to get some color on my pasty-white skin. That color was pink, but at least it was a start.

In need of a vacation

We don’t get much down time these days. Every day there is something that eats up time on our calendar. School. Therapy. Sports. Scouts. Swim lessons. Grocery Shopping. Laundry. We pack a lot of doing into the 7 days each week. It’s always about this time of year that I feel incredibly burnt out. As I watch the school year dwindle down to almost nothing, and feel summer creeping into our region, I start to check out. I want a vacation!!!

I would love, love, love to go somewhere for a few days and just be. To do only what I want to do..not what I need to do. No cleaning up. No cooking. No laundry. No shuttling kids to 3 different activities.  I just want to sit and read a book uninterrupted. If a cabana boy wants to bring me a cold beverage, that would be fantastic….but I don’t want to get up from my seat. He needs to come to me.

I want to sleep in a nicely made bed that I don’t have to make when I get up in the morning. I want someone to do it for me. I want to walk down to a restaurant, point to an item and say, “I’d like to eat this, please.” I want to be waited upon. And I want to sleep. Sleep as much as I like without having someone crying for me in the middle of the night. Without having someone jabbing me with their little elbow or toes. Without someone snoring in my ear.

I’d love to waste the day away…not have anywhere to go or anyone to get ready. Just be.

That would be a dream vacation….

Sidetracked

I haven’t written in a week. Nothing incredibly major has been going on, but I just haven’t found, nay, made the time to write. I feel pulled in several directions these days, and getting my thoughts down on “paper” has been pushed down the priority ladder. I miss writing. It helps me process everything that goes on in our lives.

Last week Jake had his MAP testing. Forgive me as I cannot recall what MAP stands for, but the kids take the tests in math and reading three times a year–once in fall, once in winter and once in spring. Jake’s reading test was last Wednesday. He went up 14 points since last spring. That is huge. The average is 8-10. He is making gains!

We had Open House at the boys’ elementary school on Thursday. Tate was incredibly excited to go this year, which is new because in the past he could barely make it through the doors of the school. This year he came in with us, and practically ran down the hall towards their classrooms. We went to Jake’s classroom first. Jake was excitedly showing us his state poster project, and his writing samples. (We need to work on punctuation. Oy vey!) We also talked to his teacher, and she was praising his independence as of late, as well as his progress over the year! Tate kept pushing us to be done so that he could go to his classroom 3 doors down the hall. We finished up with Jake’s room after about 10 minutes.

We made our way to Tate’s classroom. His teacher and favorite aide were there. He got all excited and started to do his “white man” dance in the hall. He totally, without a doubt, inherited Hubz’s moves. As he was dancing, we all entered the classroom..except Tate. That was just a bit too weird…I mean, going into his classroom at night?! What was wrong with us?! Hubz went outside into the hall to try to encourage Tate as I looked through his work. He really had some impressive pieces to show off that night! I loved that his teacher had a slideshow of the year so far. The kids are obviously enjoying their teacher, aides and each other.

We tried to engage Tate to come into the classroom via a video on the iPad. It was a video that his class had made about One Fish, Two Fish, Red Fish, Blue Fish. (Hence the soliloquy about it the prior week when he wasn’t feeling well.) He was game until he saw a little kid in the hall beeline for Tate’s locker. The younger child (preschool-age) opened Tate’s locker and started opening and shutting the door repeatedly. We lost Tate. That was NOT in the plan. It was HIS locker. He kept standing guard at his locker and would not come into the room. Every time he’d get close, I swear that preschooler was watching, because that preschooler would make another beeline for Tate’s locker.

In addition to these activities, I got suckered into helping with a few PTO committees. As with most schools, the same 20 people volunteer all the time. Last week I was concurrently running a spring fundraiser, helped out with the school book fair, and helped organize 2 classrooms for Teacher Appreciation Week. Oh, and Tate’s ABA team had a team meeting, and I was given a couple of action items for that, as well.

Additionally, we had some lovely weather last week. After an incredibly cold and wet spring, we had 3 back-to-back days above 70 degrees (two were in the 80′s!!) and were sunny. I had the kids out and about so we could enjoy it all.

Hopefully I can better juggle the craziness that is the end of the school year and also manage to write more in my blog over the next few weeks. There is a lot going on….so I will definitely try!

Some Kind of Wonderful

This weekend our family saw some little victories. They were the “little things” that we all talk about…nothing super huge in the scope of life, but thanks to the life we lead, well, little things are definitely worth celebrating.

On Friday, Tate had his 7-year-old (!!) well-check visit. Our doctor is a great pediatrician, but he is the first to admit he is not an autism expert. He asked a few questions about Tate, and when I told him that Tate could answer them, he turned to Tate and asked Tate..and Tate answered. It was a bit of a mumble, but the doctor and I took it. It’s never too early to start self-advocating!!

That evening, Tate had a birthday party to attend. It was his friend Geo. The last time we had gone to Geo’s birthday party was 2 years ago–right after the official autism diagnosis. We left the party right before the cake, as just the thought of singing “Happy Birthday” was freaking Tate out–big time. This year?! Tate managed to maintain his sanity and stay regulated during a 2-hour party at Chuck-E-Cheese. He climbed, played a few games, danced to the animatronic Chuck-E, and shock of shocks, he high-fived the “real” Chuck-E when he came to our table. (Insert jawdrop) 

Tate sang and danced while we sang “Happy Birthday” to Geo. He had a blast. He ate, he played, and at the end of the party, he said thank you to Geo’s mom. It was perfect. The victory was not lost on Geo’s mom, who asked him for a high-five..and asked if he would like a play date soon. Tate said yes!

On Saturday we had soccer. Tate was a bit resistant at first, but the second his buddy showed up, Tate was out on the soccer field, kicking the ball around like a champ. He just was…happy. 

Later in the day we had a bar-b-que with our neighbors. We have six kids between us, ages  9.5 to 3. It was chaotic and loud..but fun. Tate held his own, pumping on a swing on the play set, jumping on the trampoline, and asking for a turn in a play house. It was going so well. He didn’t even lose his shtuff when the neighbor’s son tried to antagonize him. He just moved along…and found something else to do. Yes, he was slightly removed from the group, but he did what he needed to do to stay in control. He also let me know that he was tired and wanted to go to bed, so we let him fall asleep on the neighbor’s couch while the other kids watched a movie. 

On Sunday we played in the yard for a bit, and then we made our way to Jake’s first lacrosse game of the season. Jake doesn’t mind practices, but games really give him some anxiety. We were happy to see that he did so well getting his uniform on, and put on his gear  mostly by himself. Last year he couldn’t manage that. 

Once he was with teammates on the field, he got a ball and started to practice with one of his teammates. He also kept up much more on the field, and while he avoided any of the major action, he was more “with it”. He did a great job, and we were proud of him.

While Jake was playing his game, I had the younger two boys on the playground. Cole was like the mayor. He told everyone his name, played with a few different groups, and pretty much walked (and ran!) around like he owned the place. I wasn’t so worried about him..but I did have to kiss his head when he bumped it on the slide.

Tate did amazingly well. He shared the swings with other children..and navigated a few social interactions pretty well. When he was getting anxious about the swing and whether he would ever get it back, he came and asked me to play with my phone. He was able to regulate by watching a video of spinning ceiling fans and a 3-minute segment of a Doc McStuffins episode. He stayed regulated and played quite well. 

Last night Tate’s allergies were flaring. It was obvious his head hurt, and his nose kept running incessantly. Around midnight I awoke to the boys’ bathroom light on, and the toilet lid slamming up. I went to check on the culprit and found Tate crouched there. He looked up at me and croaked, “My tummy is sick.” He managed to get his mess in the actual toilet. Upon examination of his bed, he had gotten sick there, too, when he coughed from his allergies…and I stripped it and threw it all in the tub to be dealt with in the morning.

He went and laid down on the floor next to my and Hubz’s bed. I laid next to him. He did a soliloquy of “One Fish, Two Fish, Red Fish, Blue Fish”…twice. But after an hour, he asked to go lay on the floor of his bedroom…and he fell asleep until 6 am. This was nothing major, but it was.

So, this weekend was nothing major…and some kind of wonderful as we got to bask in the progress that our kids are making each and every day. It felt good.