A family's story

Posts tagged ‘Frustration’

But Wait….

You know that scene from A Christmas Story where Ralphie FINALLY gets his chance to tell Santa that he wants the Daisy Red Rider Carbine Action BB Gun….and he draws a total blank? When Santa suggests a football, he nods along, not sure what to do with himself…just kind of frozen in the moment? And, how once the elf puts him on the slide and out of the way, with a football on the way for his big gift, Ralphie jumps into action and awareness?

Well, that pretty much sums up how things have been going here with Jake’s education the past few weeks. We have been in a whirlwind of activity. I know that I had mentioned that Jake had an IEP meeting coming up on the 30th of January. Let’s just say that it didn’t go quite as we had hoped, and let’s just say that placement changes were encouraged, and only once we had a few moments to actually breathe and take it all in did it seem like the placement was a *wee* bit premature and a *wee* bit too restrictive for our liking. We THANKFULLY did not sign when we left that morning. And we THANKFULLY observed the new placement and voiced our concerns with the coordinator of special services. And we THANKFULLY spoke VERY FRANKLY with Jake and made some discoveries that were heartbreaking.

Jake’s anxiety and stress were at fever pitch. He was miserable. He was not able to pull it together in school to learn or demonstrate that he knew what had been taught. The staff was incredibly frustrated. They feel that they have tried everything. Something was broken. During the first weekend of February we sat down to talk to Jake about his schoolwork, anxiety and struggles at school. We also wanted to see how he felt about being in a smaller environment for his entire day…instead of for most of it. After promising that he wouldn’t get into trouble…and that no one else would get into trouble…Jake spilled his soul. He is being bullied. Other kids in the class are being bullied. By one kid. ONE KID.

Jake said he liked the resource room, but he also really likes being with all of the other kids. He admitted that he was scared to go back to his class. He didn’t feel comfortable in there all the time. He indicated that this child made him feel scared and upset. He said when the child talked to him, Jake’s head got fuzzy and his knees felt squishy. I probed more…I think Jake was having the “fight or flight” response a lot during his day. NO WONDER he was so heightened and dysregulated and unable to hold it together. I wrote to his team…and I know that I was not the only parent to bring up the bully situation lately. And yet, that bully is still in the classroom….

We also strongly suspect that some of Jake’s avoidance behaviors are learned and reinforced. We were told more than once over the past few weeks that when he gets really stubborn and quiet and does his little shake thing where he won’t do the work (he’s avoiding curriculum that is difficult for him) some of the staff let him just do what he wants…like sit there and take as much time as he wants to regulate. Or to sit there and draw so that he can calm down. Or he purposely knocks his paper on the floor and goes under the table to pick it up and takes a few minutes…and they let it happen. Because, well, he needs breaks. You might be thinking, Nomygodtheydidnot. But, yeah, they did…

Hubz and I aren’t saying that a more restrictive environment is never a possibility…but we are saying that we want to exhaust all options before we get to that point.

We had a second IEP meeting the other day to get a Functional Behavior Analysis done for Jake in his current setting. We really want the behavior analyst to observe and give us some data and information surrounding what is producing the anxiety at school. We have our ideas. The members of the IEP team have theirs. We are not exactly on the same page. At points during our meeting, I honestly felt like we weren’t even in the same book.

We meet again in March. By that time, he should be more comfortable with using his assistive technology at home and in the classroom. The behavior analyst will have enough observations and interviewing and data collected to address the FBA. With that, we should hopefully be able to put a BIP into place for the remainder of the school year. Aaaandd, we’ll meet again at the end of the year to determine placement for next year.

One thing I truly do not understand in this whole process is how we got from the IEP in October where things were going ok…not super-duper fantastic, but ok, to well, he needs to be in a really restrictive environment. It’s like going from the first chapter in the first book of a trilogy to the climax of the entire story arc at the end of the third book. ARGH!!!

AAAAaaand another thing…as a parent it is incredibly frustrating to have 2 children in the same district…in the same SCHOOL, and one is getting the right supports and curriculum and so on and so forth..and the other is just…not. It makes my head spin…my heart ache…and stirs some passions within that I didn’t know existed.

I will guarantee one thing….they’re going to hear me roar.


I’m having a “heavy” day. It didn’t start out that way…as I crept up the stairs quietly this morning after my treadmill work-out, I heard Tate and Jake playing in their room. There were giggles. There was playful banter. It made me feel light, airy, and as if things were all right.

We all came downstairs, and Tate started to script about his teacher. He spent most of the time as he tried to fall asleep last night doing the same thing. She’s out for another 3 weeks due to medical complications/condition/crisis. I can’t imagine how difficult it is for her to be dealing with whatever she’s dealing with. And as a special education teacher, she has the added stress of knowing how much her absence impacts each of those kids…all differently. Tate is working through it. He did great the first two days back at school, but I think the reality of the absence of his teacher is really hitting him. I let him script, and I started to lose that light, airy feeling from earlier.

As we ate breakfast, Hubz started to chat up the boys about Science Night. See, our PTO is sponsoring a Science Night at the school. Hubz is planning on taking Jake and Cole. Tate might be up for it…or might not. He’ll be a game-time decision. Hubz was trying to talk it up to the boys this morning. My engineer husband lives for science. Jake, who typically loves science, started to poo-poo the idea of attending the science night. A cloud covered his face. His body language changed. He started to put up a few barriers. For Jake, Friday night  means putting on pj’s, watching a bit of TV and eating some snacks with all of us at home. Hubz tried a different approach…showed him a few pictures of some of the experiments that will be done in the presentation. Jake conceded to going, but he’s not excited about it. He then perseverated on it the rest of the morning. Tried to convince us that he was excited to go. (More like trying to convince himself that it’s going to be fun.) Cole is game for anything. I know he’ll love it.  I felt a bit heavier.

During car pool this morning, the kids were talking excitedly about being able to get outside and enjoy the snow over the weekend. Depending on how much rain we get, there should still be enough snow for the kids to fashion into forts and snowmen and snowballs, etc. Jake made a little squeak sound that he tends to use when he’s genuinely excited. Upon that squeak, the neighbor boy fished for Jake’s attention. He made sure to tell Jake that his sister (who was sitting next to Jake and is Jake’s age), yelled at him (the neighbor boy) the other day in their mini-van for making “weird noises like Jake”. Our neighbor boy made sure to tell Jake that his sister said it is annoying and very weird. Jake got quiet and started to ramble, as he does when he’s embarrassed. Our neighbor girl turned a nice shade of crimson and hit her brother. She tried to back-track with Jake, and he mumbled that it was ok. (But I know it wasn’t.) I asked them to all be considerate of each other and be nice. I wished them a good day and as Jake kissed my cheek goodbye, I had to look away so he didn’t see the tears welling up in my eyes. The heaviness started to weigh on my heart.

Once I dropped Cole off at preschool, I did a quick Target run. I needed a few toiletries, and wanted to get a couple “active” clothing items while they were still on sale. As I was checking out, my phone began to ring. It was the school. As I answered the phone, the boys’ school social worker first let me know that there was no emergency (so that at least calmed my heart-rate down), but also wanted to know that she had Tate in her office. He was using A LOT of “potty” talk AND was echolalic with the word “guns”. It had been going on since he was in bus line this morning. My heart sunk…ugh. She said that the moment he walked into the school (where there is a picture of a gun with a “ghostbuster” sign over it because of the new concealed-carry law in our state that allows people to have concealed weapons on their person…just not in a school), he started saying, “No guns”  constantly. Every time he said it he got a reaction. It was a vicious cycle. They took him to see the principal. He had to talk with her. (I can only imagine how that went.) Then he went to the social worker’s office, and they did his social story about expected language at school..and expected behavior. He calmed down and regulated, so she wanted to call me to let me know what had happened, and to let him talk to me.

Tate struggles with the phone and conversation. But he did tell me he was sorry he said potty words. And then he said, “Mommy, I can’t say “guns” or “no guns”. I need to try something else.” Well, at least the social story stuck with him. I asked if he was feeling ok. He said, “Yes I am.” I asked if he wanted to stay at school. He said, “Yes I do!”. So, I chatted briefly with the social worker. We agreed that the absence of his teacher is really hard for him. We also agree that he REALLY, REALLY wants to have the attention of his peers. Unfortunately, social situations and interactions are difficult for him, so when he’s already overloaded (as he is with the absence of his teacher AND the getting back into school routine), he falls back onto reactionary measures to get any type of attention. And it works.

Thankfully the social worker gets it. She is going to work with the class a bit more closely. They are all out of sorts. She’s going to work with Tate on conversation and attention starters that have some more positive connotations…and hopefully he can use those in his toolbox to interact with his peers. She’s also trying to figure out how to get rid of the signs..or a work-around them because we know that they have to be there legally.

And now, I feel quite heavy. I’m pushing through the heaviness…I am. But I am also allowed to feel it and to let it speak to me. I am using it to try to understand the “why” behind my children’s behavior. And it is helping me formulate some reaction to today’s events. It really is.

P.S. The more I think about it, the more I am irritated that Tate had to talk to the principal. Seriously, he’s not saying the word to be naughty or to be a menace to society. He is anything but that. He is truly using the words to provoke reactions from his peers so that he can interact with them. He needs guidance with navigating the social waters at school. And they need to take those damned pictures of guns down. Because, really, when it comes down to it, my autistic son, and others, have been taught to respond to visual cues their entire lives. You can’t put a picture like THAT up on EVERY.SINGLE.ENTRANCE of a school and expect kids NOT to have a reaction. For seriousness’ sake!!!!

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. 

One of those days…

Yesterday I felt like Alexander and the Terrible, Horrible, No Good Day. Things were just off from the get-go. I had a hard time waking up in the morning–even a shower and coffee didn’t get me going. Tate was obnoxiously goofy while we tried to give him his medication and talk him through dressing himself. (We totally caved and dressed him.) He kept calling us versions of poop. Yes, that is still a hurdle we haven’t overcome. Then, he got on the bus, greeted his friends with potty talk and was off. I sighed and hoped for the best.

I talked to his teacher when I picked him up from school. She said he was calm and well-adjusted that morning. He did well in class, in independent centers, and only was put in the “off-topic” area once…which is an improvement. I thought things were looking up. And then….his therapist called and cancelled. She had the same virus he has. She had a fever. She was taking the day off from clients. Ugh.

When we got home, I sat down to do homework with Tate. We made it through spelling and reading his poem. Then he needed a break. However, he didn’t want to stop his break to do more work. I made him put the tablet aside and work on his sight words. That didn’t go so well. He purposely read the wrong word..and stopped even trying. I told him he could resume his homework after we got Jake and the neighbor kids from school. He seemed ok with that.

Cole decided that it was a good day to instigate his brothers. Jake just blew it off. Tate took the bait. The two of them sparred for the rest of the evening. I was so tired of playing referee that I decided that we should run to the grocery store. Worst. Idea. Ever. Oh my God….fifth circle of hell. Tate whined the whole time, even when we followed his preferred routine in the store. Cole just *had* to walk with Jake. Which meant he was running 20 paces ahead of the rest of us, causing several elderly patrons to freak out. Jake perseverated on getting his Chef Boyardee Ravioli. (I am so winning Mom of the Year, right??)

We made our way to the produce section of the store. I had to get some veggies and fruit for lunches. Tate required us to stop and pick up some bananas. I literally had to look at every.single.bunch. I am not exaggerating. We looked at each one. The store employees stocking the section were giving me the stink eye, as Tate dubbed each bunch unworthy for various reasons…most of which were nonsensical. (I will give him that some of the bunches looked past their prime…) As Tate sat in the back of the cart, in tears, Jake suggested that we should go to the deli counter to get some American cheese. That is a treat for Tate and Cole. We got there, and of course, had to wait. That did NOT fit into Tate’s plans. He started to cry again, and shooed away several patrons. Many of them were older…like could have been my grandparents. They did not like this whining, crying, dysregulated child. I could feel the judgement as it poured over us. I tried to calm Tate, but it wasn’t working.

As I worked with Tate as the evil eyes bore down on us, Jake was in charge of Cole….and, well, Cole almost contaminated the fish in their display case. The worker had the side open to arrange the fish or something and Cole was spinning in circles. He was “thisclose” to dropping his Duplo blocks in there. Luckily Jake’s attempt at stopping his brother propelled Cole forward, and the blocks went shooting out into the main aisle…and not into the fish. Of course, as they picked up the blocks, my sensory-sensitive children kept commenting, quite loudly, about the smelly fish. More nasty stares and looks. It was great…

We got our cheese, and then walked back to the bananas. By then, we were all fried. If Tate couldn’t find bananas that he liked, I think we all were going to melt down. By the grace of God, Tate picked up a bunch of bananas (previously dubbed “too squicky”) and proclaimed them to be satisfactory. I flew to the check-out lane. All 3 boys made a beeline for the bench and waited while I paid for our groceries. Thankfully, the cashier was good-natured and could tell we were all done. She made a reference to remembering what it was like to go shopping with helpers. I was too tired and frustrated to make much small talk. I thanked her for her patience and dragged my chaos out of there.

When we got home, the boys played in the backyard as I unloaded groceries. I got everything put away, and sat out on our patio. The neighbor boy came over. It was just enough to change the dynamic. Tate started to call the boy “pooper”. The boy got irritated, as many would. He shoved Tate. Tate threw dirt at him. They then went their own ways..for a bit. Cole and Tate started to throw wood chips at each other. I intervened again. Then, all 4 boys started to dig in the dirt for worms. The dirt was finding its way all over our yard. I asked them to stop. Tate spit at me. I pulled him aside for a few minutes.

Tate rejoined the boys on our playset. We have a seesaw. He wanted a turn. Jake got off. Cole tried to swoop in, and Tate shoved him. I talked Cole into going on the glider, and Tate sat on the seesaw with our neighbor boy. The boy didn’t want to do the seesaw with Tate, so he just sat there. Tate tried to engage him, but he wouldn’t budge…until he thought it would be funny to roll off of the seesaw and send Tate down. Luckily Tate found it amusing. It could have ended very badly, but didn’t. I asked them to play appropriately on the seesaw. They moved to the swings. The neighbor decided to “freeze out” Cole. Cole started whining. Again, I engaged him to play on the slide. He seemed ok. Then he moved back by the other 3 on the swings. The boys started slapping each other. Tate threw wood chips at his brothers…thankfully he missed the neighbor boy.

I was done. I sent the neighbor boy home, and directed my boys into the house. They groused, but seemed ok with it. I made them wash their hands. Tate was dysregulated, so he started to slam the faucet on and off. I asked him to use the faucet appropriately. He shouted at me. I walked away to compose myself. Tate began to yell, shout, command that I come into the kitchen. I did, and he started to call me stinky and poopy and spit at me. I asked him to sit in our quiet area to compose himself. He hit me. Not hard, but he hit me to let me know he wasn’t happy with the situation. I asked him to use words, not his hands. He spit. I directed him to the chair in the living room to compose himself. I sat in the kitchen holding my head in my hands…praying for it all to stop.

Then, as quickly as the chaos began, it calmed down. Jake turned on the TV and put on a new episode of Team UmiZoomi. He shouted to Tate that it was a new episode. Tate mumbled and asked through tears if he could go. I said yes. He went in and began to watch the show. Cole played with Legos. Jake played with a few animal figurines. Tate flipped his stimmy stick. And I took a deep breath and started to make dinner.

Hubz came home, we ate, and then I did my 25 minute Jillian Michaels workout DVD. We ran through the bedtime routine, and the boys were in bed, asleep, by 8:30. I collapsed onto the couch…and was grateful that we made it through the day…

Two steps back…

Right now we are in a “two steps back” pattern. My kids were doing well enough, and we were enjoying the calm…and then, BAM!, we aren’t anymore. This all happened just.like.that.

Two weeks ago Jake had the tic issue and medication switch. One full week under our belts and, well, things are meh. I don’t always like that word, but in this case, it sums it up fairly accurately. He isn’t having the pronounced facial tics anymore, but the minor tic is still present. He is able to focus, but he seems a bit more anxious. And he is perseverating on having a pet lizard. I kid you not. Since at least last Wednesday. I’m trying to remain patient. He’s really, really testing my patience on this one. The last thing I need right now is to be responsible for making sure that another being survives the day at our house. I have enough going on. Jake’s nine year old brain doesn’t comprehend that while he is totally- promising- to- take- care- of- the- lizard, I have been his age. I know it will last a week–if I’m lucky.

Tate is fighting a cold. He woke up at 11:15 last night sniffling and crying because his blanket fell off of the bed. As I tucked him in and snuggled for a brief moment, he gagged. Thankfully he did not puke. But I went to bed defeated. Another week with a virus means another week of dysregulation and frustration. On top of it, I am not quite sure that his ADHD medication is at the right dose. We have a doctor’s appointment on Friday.

For the longest time he was making huge strides in reading, printing, and spelling. Academically he was gaining traction. It was nothing short of amazing. But, for the past few weeks, he has  no interest in any of it. In fact, he has to repeat his spelling and sight words from last week because he did so miserably on his test on Friday. I know I have to cut him some slack, but I know it’s more than *just* being sick.

Cole did have an ear infection. He is on antibiotics and ear drops. Have I mentioned that he is the least tolerant of medication?? He spits everything back out at us. I love being sprayed by sticky, pink, strawberry-smelling amoxicillan. My older two boys were so easy when it came to offering a syringe of medication. Not Cole. We have had to bribe him. Initially, Hubz had to hold him down while I squirted it into the back of his throat. That’s awesome. But, we have been a little lucky the past 2 times–he has been taking his meds…as long as he can have an apple juice chaser immediately after. We actually have Jake to thank for that..he brought Cole a juice box to help him feel better. Big brother to the rescue.

I’ve noticed that Cole is struggling to identify the alphabet. I just started working on it with him one-on-one. They cover the letters each week at preschool, but I know he is phoning it in there. I was singing the alphabet song with him, and he was all, “A-B-C-D-eee-ehh-shee-AA-eye-shay-blah-blah-PEE, Q, our, S, EE, oooh, bee, hmm-hmm, EX, Y, See!” Yeah…When I asked him what a letter was, out of turn, he threw out a number. What the?! He’s supposed to be my neurotypical kid. DAMNIT! So I will see how working with him goes. If I don’t see improvement, that adds eleventy billion more things to my to-do list. *sigh*

As I sit and type, I hear Tate resisting his therapist. This is becoming more common. I know the programs are getting more difficult. And I worry about his meds. And whether he’s burning out.

So, while we have taken some steps forward, there always are periods where we take some steps back..and we’re in one. I don’t like them. They make me uneasy and uncomfortable. Ultimately, the periods of setback propel us forward, as we change things up and find new therapy, programs and routines that work…but while we’re sitting in a step-back, it stinks..and puts us in a hard place.



Always something…

Sometimes, I forget that Jake has “special needs”. He is my helper. My rule-follower. Far too often I ask him to do a lot. A lot more than a kid his age should have to do. But, we both know that comes with the territory…Tate’s needs often take more of my attention and time. Jake seems to understand this. He doesn’t complain and doesn’t like to tell me when he’s feeling off, ill, or grumpy.

Jake has significant ADHD. It affects his life in many ways. Since we made the decision to medicate him at the end of August, we have seen improved focus and less anxiety over what comes next because he is better able to plan and follow his plans and coping mechanisms because he isn’t five steps behind. 

In October we started noticing that Jake was rolling his eyes…a tic. It wasn’t very often, but did occur now and then. I brought it up with the doctor, and he said that it could be dry eyes, which is common with the medication. We started giving Jake eye drops when he would roll his eyes in this tic-like fashion. It was infrequent.

In December, the eye tic started happening a bit more. And it got worse when Jake was more anxious. Like at family functions. Or when we dropped him and his brothers off at my in-laws for an overnight. Or when he had a test at school. 

Winter break started, and we only saw the eye roll when Jake was overtired and had too much tv time. Prior to medication, Jake would get a few tics now and then, but they were never consistent. They almost always occurred with stress, fatigue, and too much screen time.

Last week or two I noticed the eye roll tic more. Especially when Jake was anxious. I made a note to ask his teachers about it. He had a big schedule change with the addition of a reading club Tuesday and Thursday afternoons after school and a Lego social group on Saturday mornings. On Saturday nights he is doing a Lacrosse skills class. The eye roll tic would often pop up before going to his skills class…and he was doing it quite frequently at his Cub Scout Pinewood Derby on Friday.

This past weekend I was knocked out with a really bad cold. I was in bed for half the day on Sunday. The other half of the day I was trying to keep the kids occupied while Hubz assembled the new bunk beds. Because I felt like garbage, Jake had almost an entire day of tv. (Please do not send the authorities to my house…) The tic got bad.

He didn’t sleep well Sunday night. He was nervous on his new top bunk. He said he woke up a lot. He was up before 5 am. At 6 am he headed downstairs and watched some more tv. Thanks to an email from his teacher the night before, we knew that she was going to be out with the flu. Jake was nervous about the substitute.

Yesterday around 1:45 I received a call from the school nurse. Jake had been in OT and the OT was concerned. He kept rolling his eyes (the tic) and trying to crack his neck. He said his brain felt “crazy”. The nurse checked all of his vitals. They were fine. She checked his eyes, which were ok. She asked him questions to assess if he was confused. He was not. 

Our school social worker is familiar with seizures. She said she was sure it wasn’t a seizure…it didn’t seem like it. She felt that his tics were magnified…so I called the psychiatrist. He wasn’t in the office, so I left a message on the “it’s-urgent-but-not-life-threatening” voicemail. He called me back in about 15 minutes. 

We think Jake’s meds are exacerbating his tics. It is quite common. We are changing his meds. He needs to be off of the current med for 2 days before starting the new one. With the doctor’s ok, we will wean off the old meds this weekend and start the new meds on Monday. 

Jake is making such strides academically, socially, and with self-help skills. I hate for him to have a big setback. I was getting so confident in his progress. And now, this. On top of the really rough week we had with Tate last week. It’s just always something that puts me back in my place and makes me realize that we can never, ever have time off. We always have to be on and ready.

Mother Nature is taunting us

The weather around here has been all over the place lately. On Friday and Saturday it was warm enough that I could allow my children to go outside with only one of the layers of their 2-layer coats, and a hat. They really didn’t even need their mittens or gloves. No boots. No snowpants. High 40-degree weather in January is a god-send, and we enjoyed it.

I made the boys go outside and play on Saturday. I  know, I’m the meanest mom EVER! Well, according to Jake, anyway. Tate and Cole were all over running around, playing tag, and swinging on the swingset. They took in all of the glory that is playing outdoors. 

I knew I could allow them to go outside and frolic because come Sunday, the weather was going to turn. Turn frigid. Turn into the weather that is notorious around these parts. So we played and ran around.

Saturday night the wind started to pick up. Scratch that. It started to howl. I had a small headache. I knew that Tate was struggling–he took forever to fall asleep…even with Jake by his side in the basement. (Since it was the weekend, they were allowed to sleep on our futon down in the dark, quiet basement.)

When the boys woke us up on Sunday morning, at 4 am, Tate was already whining and scripting. He had dark half circles under his eyes, and his ears were bright red. He was pale and looked restless. Hubz took them downstairs and I tried to sleep a bit longer. Cole had jumped into bed with me, so I had sharp little toes in my back and spleen…but we managed to stay in bed until close to 7.

Tate wore his pajamas all day. He didn’t want to leave the house. He didn’t want to eat much, either. Later in the day, after a snack of Starburst, Tate felt ill and threw up. Once. But he was all out of sorts. By the time I got back from a baby shower that I had attended, he was in full-blown whine mode. He was seeking input from his brothers, the couch, the floor, from me, from Hubz. He wanted to walk on the treadmill, too. It was rough.

Yesterday our temperatures hovered around 8 degrees Fahrenheit. Brr! It was frigid. It was windy. Sunny, thankfully, but cold. I was able to talk Tate into wearing clothes, but he just wanted to lay on the couch. He was zonked. He had woken up at 3 am. He dozed off for a bit after that, but was up by 5:30 a.m. for good. He was a zombie. I was, too. 

Because he was so dysregulated from the weather and lack of sleep, he did a circuit of OT in our house. He did the treadmill at a 2.5 incline and 3.5 speed for about 10 minutes. Then he rode our exercise bike. Once he tired of that, he moved to our trampoline. That lasted for a mere minute and he sat on the exercise ball. Eventually he vacuumed for about 15 minutes…scripting the entire time. I would try to engage him, but he would simply return to his scripts. It made me sad…and frustrated…and worried.

I know I felt awful and worn down. I just wanted to sleep. Tate would have none of it. Thankfully, Hubz was home yesterday due to MLK Jr. Day. I could get a nap in before going to teach my religious ed class. Tate was up the entire 1 3/4 hours that I slept. He was up the entire time we were away. And he whined the whole time. I could see how frayed Hubz’s nerves were when we got back. Luckily, Tate was ok through dinner. 

Hubz took the boys upstairs to shower and bathe. Usually, a good soak in the tub is soothing and relaxes Tate. Not last night. His anxiety was high. He was in a state of total dysregulation. He whined for the next half hour. And then, we put him to bed. After a brief fight, he did succumb to sleep…and slept until about 5 am, which is a decent sleep, considering we put him to bed at 7:15.

Today it is frigid again. As I prepped the boys for school, the Weather Channel app on my phone said it was -4 degrees. -17 with windchill. Brrrr! Tate was all kinds of irritated by the layers and boots we made him wear…but I know how he reacts to extreme temperatures…and I know he has no awareness of how extreme the temps are…

The next few days are going to be bone-chilling cold…but it will gradually warm up. By next Monday we’re supposed to be near 40 degrees again. These big swings in temperatures drive anyone crazy, but most especially my child with sensory processing disorder. He just can’t keep up.

Now, I’m off to bundle up from my head to my toes so I can go get Tate from school…I need about 15 minutes to just get myself bundled up…let alone anyone else!!!

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