Tuesday, May 16, 2017

March 2017 Through Early April 2017 and Our ADHD Journey: Part I

March was a VERY challenging month due to Tyler's behavioral issues becoming more than I or others could manage. I detail that more at the end of this post, but I prefer to focus my posts on the cuteness, joy, and silliness the kids bring into our lives. I think it's important to document the difficult times for posterity and perspective's sake, like I did with my infertility posts, but I prefer not to dwell on the challenges. The main benefit I get from this blog is seeing cute pictures and reliving fun memories I've long forgotten.

The above pictures commemorate early in the month when Tyler found an enormous corn flake. It was the size of about 20 regular flakes all stuck together. With his lack of impulse control it was all I could do to prevent him from eating it long enough to take these pictures. Other cute moments include:

Oscar: Tyler, would you like me to make you a small pizza for dinner?
Tyler: Uh huh! It's yummy and yummy and beautiful!

"It's fun to make baby happy!"

"I want to play everything all day!"

Tyler got a Kit Kat in church one day. He then informed me that "Kit Kats are made by kitty cats."

In spite of growing up in Utah, I'm a true PNW girl. When the sun came out after weeks of clouds, I pulled down the blinds because it was too bright. Turns out my Tyler is a child of the light, like his daddy. He asked "may I please have the sun come into the room so I can be happy?"

Tyler saying "when I was in daddy's belly belly belly screen." He understands that Allison was a baby in my belly once, so he made the assumption that Allison was in my baby because she's and girl and I'm a girl, so since he's a boy and daddy's a boy, he must have been in daddy's belly when he was a baby. He also calls bellies "belly screens" because "Bot" on "Team Umizoomi" has a belly screen. 
Tyler saw a picture of Jesus healing a little girl as we were walking around the church during Sunday school. I explained that Jesus was making her feel better by blessing her when she was sick, so he pretended to sneeze and said "ah-choo! I'm sick. I need daddy to give me a blessing."

Tyler wanted to put me to bed, but I said I was too tired and wanted him to carry me. He said he was too small and demonstrated to me how to walk up the stairs one leg at a time.
Meanwhile Allison's climbing skills went nuts! For example, she figured out how to get to the dishes by pushing over her high chair then climbing on Tyler's stove toy and up onto the chair. She also started running, so I'm always on my feet keeping up with her and Tyler, and she started saying "uh oh," "all done," and trying to say "Tyler." Speaking specific words was a bit delayed, but now it's going strong. She tries to imitate what she hears and does better with inflection than words.

One of the cutest things she does it shake and dance at the end of "Team Umizoomi" when they do the crazy shake. I really need to get it on video.

Early March is, of course, my birthday, so we had lots of fun and lots of food. Oscar and Tyler picked me up a cake on Saturday the 4th and Lia and Hana came up with Thai food and presents. Oscar took our #2 candle and drew a 5 on the back of it for my 35th.

On my actual birthday on Sunday the 5th Allison got a little nap on me in the mother's room and the primary ladies gave me a gift with a bag of suckers in it. Allison thoroughly enjoyed her first sucker after church. Oscar and Tyler made me a delicious dinner of a pricey New York steak, pasta, veggies with bacon, and an Oreo/cookie/reeses'/s'more dessert.

It was all so good and extra fattening (I'm still recovering from the weight I gained...).

Then I got some nice cuddles from my girl and enjoyed my gifts - the illustrated "Harry Potter and the Sorcerer's Stone" from Malia and a warm robe from Oscar.

The next day Tyler fell asleep in the car on our way over to Family Home Evening at the church. I tried to take him out but he was just zonked. Oscar had told some of the branch members it was my birthday, so they brought me a cake and sang to me after the lesson.

And the next day I met up with some friends from the ward for a ladies night at Red Robin. They gave me a sundae for my birthday, but I just had one bite. 😋

Here's Allison walking around in daddy's hat. It was adorable how long it took her to take it off. She can't jump yet but she likes bouncing on the bed with Tyler and trying to jump on an upturned bedside table.

Allison gave herself a nasty bump on the forehead during church one Sunday. Those pews can be dangerous! I was trying to restrain her during a prayer, but she got away from me and bonked right into the pew in front of us. I had to rush her out of the chapel as quick as I could so she didn't erupt in the middle of a prayer.

On Mondays and Fridays I often take the kids over to the mommy toddler workout class at  the Mill Creek YMCA. Unfortunately I have zero pictures of the class since I'm so occupied with the kids, but they usually have lots of fun there. I've taken both of them before, but most of the time I leave Allison in the child care so I can give Tyler more one on one attention. These pics are the little outdoor play area they like to run around in after the class is over when the weather's nice.

Our main Mukilteo YMCA has a nice big outdoor playground. We're finally getting good enough weather to use it. Again, I usually just bring one kid at a time. Allison has no sense of danger yet and will climb all over the big kid areas, which terrifies me.
 Ty has a longer attention span for books now which has opened up more reading options for us. He can handle a lot more words per page now, so most picture books work out fine. Allison tears paperback books usually, but she took a pretty strong interest in this book of Disney fairytales and didn't even trying tearing it. 
I love seeing how much this boy loves his sister.

Ty does incredible things with his Legos! He did this all on his own.

I love watching this girl toddle around church and drum the chairs.
This is what happens when church goes from 11am-2pm, particularly if Ty has a meltdown and Allison refuses to nap on me in the mother's room.

Just being lazy with daddy

We usually visit the children's museum once a week or so now that we have a membership. Here they are beng cute in the construction room.
Ty really enjoys loading up the airplane cargo. We went several times before I even noticed this activity.
He's almost unable to play in the toddler area anymore. It's only for kids 3 and under.

They always enjoy going upstairs and outside to the playground, dinosaur pit, and musical instruments. Allison's just so cute wandering about! Ty was nearly 2 before he got very interested in playgrounds, but she's been fascinated by them since before she was even mobile.

Here's me finally getting a chance to relax while the kids are in quiet/nap time. The cats finally get some cuddles once the kids are in their rooms.
And here's Allison in her Christmas jammies because, hey, they still fit! This picture is from the day she first climbed up on her rocking chair all by herself without standing on anything to get up to it. It brings her much joy and much pain (she's had a few nasty falls, yet they've done nothing to deter her from continuing to climb it).

Ty still naps sometimes, but it's become impossible to predict or plan on. One time I failed to get him a nap after he went to bed late, woke up early, got up twice during the night, and had an active morning. Other days he'll fall asleep in quiet time after having a low key morning and getting plenty of sleep the night before.
Here's Ty hiding in the lockers at the YMCA before I took him swimming. He insisted I take a picture, though you're not supposed to use phones in the locker rooms.

And here are my sweet kiddos making a train out of a big box. Who needs big expensive toys when you have boxes?

I had to take this picture on the right to commemorate Tyler actually doing something quiet during quiet time (after destroying his room beforehand of course).

 And for the 2 days before our Florida trip I had my hair and nails done and took my sweet boy out for Thai food. When he's in a good mood, it is tremendously fun to spend time with him one on one!

Our ADHD Journey: Part I
I mentioned in my last post that I pulled Tyler out of preschool in mid February for behavioral issues. A behavioral therapist representative from my insurance recommended we get him into a play therapist, but no one would take him before 4 years old. She also recommended working with an occupational therapist, but the waiting list for one was 2-3 months long. For over 2 months we felt completely stuck. We knew Tyler needed professional help, but we couldn't get it for him. In spite of all the happy pictures you see here, it was actually a very frustrating time period. I spent many nights barely able to sleep while stressing constantly about Tyler and sobbing into my pillow.

Tyler's always been challenging, but we figured he was just a spirited child and assumed he'd eventually outgrow his negative behaviors. He's our miracle child after 7 years of longing for a baby, so we didn't know what sort of behavior to expect when, and in for a long time we were in denial that he was any different from his peers. Even his pediatrician felt that none of the problems we'd mentioned were beyond the scope of normal 3 year old behavior. That didn't sit well with me though, because Tyler's behavior was becoming progressively worse and everything I'd read said negative toddler behaviors usually start decreasing around age 3 as communication skills improve. When older kids do misbehave there's usually some motivation behind it (feeling overwhelmed, tired, upset, etc). In Tyler the behavior was often unprovoked and could even come out of affection. For example, he'd never had biting issues as a toddler, but at 3 and 1/2 years old he started biting us, Allison, and other kids while giving us hugs.

Tyler used to do really well in multiple environments; the gym, IKEA, Fred Meyer, library storytime, the park, and regular preschool. July was when we got our first worrisome complaint from the gym (at 3 years and 2 months old), but even then he had mostly good days and just the occasional bad day. Then in September they suspended him for a month after he lost control and went deliberately running into an 18 month old girl with a toy airplane. I thought suspending him was a bit extreme. He was obviously overstimulated, so I felt the problem would be solved by his simply spending less time there (he'd been at the kids' klub nearly two hours when it happened and there was never an issue when I stayed less than an hour). I also thought a suspension would be completely pointless because he couldn't understand that his behavior was the reason why we weren't attending anymore, and he can't learn how to behave appropriately at the gym by not spending any time there. At that point he had never had a problem anywhere else, so I blamed the gym must for the problem - it was too stimulating, there were too many kids, the adults weren't interactive enough, and there wasn't enough structure. He started preschool in mid November, and I told his teachers he'd had some issues at the gym, but they said he was doing fine at school. This further convinced me that Ty just needed more structure and routine and that free play at the gym was simply too overwhelming for him.

During that suspension we tried another gym, Emerald City Athletics, that had a simpler kids' area without a television or a large play structure. I was ready to quit LA Fitness entirely if Tyler was behaving better there, but it ended up being more or less the same. He did get less stimulated, but there wasn't enough space to get his energy out, so I was still having to find ways to burn it off afer we got home. He had some behavioral issues there, though nothing that caused me too much concern. One caregiver was kind but firm with him and figured out that he behaved much better if she gave him extra one on one attention and kept him focused on puzzles and building toys. I was always happy to bring Tyler there when she was working, but her schedule was only part time and inconsistent, so I could never plan on it. I cancelled my membership quickly because the other caregivers were constantly paging me over things I thought they should have been able to take care of themselves. For example, they didn't separate the sleeping babies from the older kids, and Ty would try to wake the babies up. I didn't understand why they couldn't just put sleeping babies in a locked off area like LA Fitness does. They'd page me or have someone get me to come talk to him about it, but of course, it didn't make the slightest difference. They'd also tell me he was getting in kids' faces too much, but again, I don't think they did much about it besides asking him to stop (which never works. You have to redirect his attention). They were even paging me quite a bit about Allison being too fussy. I got far more complaints from them than I ever did from LA Fitness, and I hated hearing pages coming in over the intercom. It'd fill me with anxiety every time I'd hear it, though the vast majority of the time they were just calling personal trainers to come meet their clients. Since I wasn't comfortable there, I decided to give LA Fitness another chance when Ty's suspension was up at the beginning of October.

Then at the beginning of December Tyler got banned from LA Fitness. No issues had been brought to our attention in the two months since returning from his suspension, but then he had some pretty bad incidents one evening after missing his nap. He was still napping regularly then, though he'd skip it occasionally if we had a low key morning. That morning I took him to play at Pump it Up for almost 3 hours, so I was positive he'd get his nap and shocked when he didn't. After he bit someone, spat at a couple kids, and got overly rough with another, Oscar took him home and put him right to bed. We had never put him to bed before 7:30pm before, but he slept straight through that night from 6:15pm until 7:00am, nearly 13 hours! It was obvious to me that he'd been tired and overstimulated, and again, I felt the gym management had overreacted. What bothered me most is that they hadn't even warned us that kicking him out was a possibility. I asked after we first returned what would happen if he hurt someone again, and they had no answer for me. I thought at worst it would be another month's suspension, so it came as a pretty nasty shock when they simply said he was no longer welcome there. I thought this was tremendously unfair. Tyler's missing nap after a busy morning was completely new territory for me. Now that I knew it would trigger him, I offered to try to avoid it by limiting his time there to twice a week and only in the mornings, but they wouldn't work with me at all. The regional manager, who'd never even met Tyler, shut me down when I tried to explain that Tyler is a very affectionate boy and that he was likely trying to hug or play with the kids but can't understand when he's being too rough. They said he couldn't come back for at least a year and treated my sweet little boy like he was some sort of dangerous criminal. I told them I had no interest in ever returning to a place that had humiliated me. How could I be comfortable going to a gym where I was forbidden from bringing one of my own children and where the workers viewed me as the mother of a budding sociopath!

We didn't join another gym for over a month but began thinking that the YMCA would be the best option. It'd been low on our list originally since it's more out of our way than several other gyms with lower montly costs, but a big benefit I saw from it is that they separate the kids 3 and up from the kids under 3. I thought that would be good for Ty since he tends to behave better around older kids, and I wouldn't have to worry about him trying to wake up sleeping babies or barreling through them when he sees something he wants. Even before Tyler started having any problems at our old gym, I'd planned on eventually joining the Y so my kids could use the pool and learn how to swim there (at LA Fitness you have to be 17 or older to use any of the facilities). We joined during the 2nd week of January when they waive the enrollent fee, and Tyler did well in the Adventure Zone for about a month. I was also thrilled when I found out they changed diapers, had a fun outdoor playground that's fenced in, had free towel service, offered swim lessons at a reasonable cost, and provided shampoo and conditioner in their showers. Those conveniences totally make the extra $25 a month worth it. I would have joined much sooner had I known how much happier I would be there. I immediately knew that even if Tyler ended up having issues in the child care and couldn't be left alone there, I would still be glad we'd joined. Just having Allison taken care of in a separate area is tremendously helpful since it allows me to focus on Tyler. At minimum I can leave Allison in the child watch while I take Tyler swimming, let him play on the outdoor playground, or even stay with him while he plays in the Adventure Zone. It was definitely the right choice for our family.

In early February Tyler had his first problems at preschool. He'd bit a friend, and we were told that every week leading up to it he'd get more and more physical with his classmates. Often it was from hugging to much and not letting go when the others were done hugging while other times it was pushing and hitting and generally having no respect for personal boundaries. This was news to me. I'd been under the delusion that he behaved well at preschool because it was well structured and he got a decent amount of attention there. He does do better under those circumstances than in unstructured playcare with lots of children running around, but it doesn't resolve the problem entirely. We worked with him so much that day, even taking away television, the ipad, cereal, and juice as a punishment. We talked to him about it so much that he even randomly stopped eating his cereal the next morning and completely umprompted said "when I go to preschool, I need to be nice and not touch the other kids." I knew he'd gotten the message, yet everything we and the teachers did to work with him made zero difference. He was just as in your face and overly physical that day and the next at school, minus the biting. Then the day of their Valentine's celebration, things got so bad that they had to call me to come and get him after about 90 minutes. He'd scratched a girl across the face and was hitting and pushing and they couldn't get him to stop and calm down. That was when I decided to pull him out and have him evaluated. They didn't kick him out or even mention kicking him out, but it wasn't worth paying for tuition anymore when I was constantly worried he was going to hurt the other kids.

Originally I assumed I and a professional counselor would work with Tyler and that he'd be ready to come back to school in about a month, but he only became more and more challenging as the weeks went by. He also began misbehaving in all social situations we attended, even in a low key environment like the Fred Meyer childcare with only one other child around. We attempted swim lessons in February, but he could not keep his hands to himself whenever the teacher worked with another student. Now that his issues were interfering with his ability to participate in age appropriate activities, people began taking us more seriously and my insurance representative advised us to look into special needs preschool through the school district. I sent in my paperwork and they scheduled a referral meeting to discuss it with us at the end of March.

We still had the occasional good day in playcare without any incidents, but they were outnumbered by the bad ones and there was really no way to predict or prevent the rough behavior from occurring. The fact that he can have good days and used to have them more often, though, makes me wonder if he could have good days most of the time if we can find the right balance of sensory stimulation and attention for him, particularly if he's responsive to medication.

I'd read about ADHD in my own research but had initially ruled it out because Tyler can be focused when he's doing something he likes or when he's getting lots of attention and interaction. I'd been under the impression that ADHD kids were just wild and running around at all times, like a child I used to teach in Sunday school. I've since learned that there's a spectrum with ADHD and that ADHD kids often can hyperfocus on something they really enjoy doing. The more I read about it, the more convinced I became that Tyler had it.

After Tyler had his first incident at the YMCA (becoming overstimulated and too difficult to manage), I told Sandy, the lady who heads up the childcare, that we suspected Tyler had ADHD and were on a waiting list to have him evaluated. The staff's actually been really understanding and supportive of us throughout this whole process. I told her about Tyler getting kicked out of our other gym, and she assured me that that wouldn't happen here. Rather than treating Tyler like a dangerous criminal or a business liability, they've treated him like a member of the club who deserves the opportunity to play and have fun just as much as the other children. Yes, they often have to come get us when he's misbehaving and we've had to really limit his time there, but they've always been very kind and sympathetic towards us. We've never felt judged or unwanted the way we did at the other two gyms.

I wasn't able to get Tyler into an occupational therapist or a play therapist until halfway through April, but I was able to get him into a psychologist at the end of February. During our first visit Tyler went into full blown crazy zone. For once it was useful since the doctor was able to get a clear picture of what we've been dealing with, and he even admitted in a later visit that he's a trained professional yet even he was overwhelmed by Tyler's behavior. He'd had me bring Allison in so he could observe the dynamic between her and Tyler. Tyler represented it perfectly by relentlessly wrestling her to the ground while trying to hug her and pushing her out of the way whenever he wanted something she was playing with. The psychologist couldn't believe how resilient Allison was. I told him "it's because she's been putting up with Tyler her entire life!" I also told him about how I once got reported to CPS when I slapped Tyler's hand during swim lessons after pulling him out of the pool to prevent him from deliberately scratching the kid next to him. He said "you don't deserve to be reported for bad parenting. You deserve a medal!" Seeing the psychologist helped us understand what's motivating Tyler's behavior, which doesn't make it any less challenging to work through but does make me a lot more compassionate and loving towards Tyler rather than angry at him for acting out or being disobedient. The psychologist gave us some ideas to help manage the behavior, though for the most part we were already using similar techniques. It was comforting to hear that we've intuitively known what we can do to help him, but it's also exhausting to think "really? I've already been doing what I'm supposed to do and he's still this challenging?" At least we now knew Tyler had a definite neurological issue, but we still felt powerless to help him. Medication is recommended and highly effective for ADHD, but Tyler was too young for it. They can prescribe it at his age but they prefer not to do so until age 6 due to small children being more sensitive to its side effects.

I felt some relief after having Tyler's referral meeting with the Mukilteo school district at the end of March. It went well. It was nice to be in a room full of experts on child behavior reassuring me that "people often assume that these issues are due to improper parenting. They're not. You guys have been doing the best you could with the knowledge and resources you had." They also helped us understand why Tyler's symptoms seem to be constantly cycling no matter what techniques I try. I'd given them a very detailed account of what we've been experiencing, and it sounded to them like he might have an under responsive form of sensory processing disorder (SPD) on top of his ADHD. I hadn't really researched SPD much because I'd only been reading about the symptoms of kids who are over responsive to sensory stimulation. I'd automatically ruled it out and stopped researching it because none of those signs applied to Tyler. I hadn't realized there was a sensory seeking form of SPD as well. When I looked up the symptoms for it, he fit into every single category. ADHD explains his hyperactivity, impulsiveness, and difficulty focusing and staying still, but it doesn't explain the rest of his symptoms (his high pain tolerance, zero respect for personal boundaries, an inability to keep his hands to himself no matter how much he's told to, finding it amusing when others yell at him or show signs of distress, etc.).

It was a pretty clear consensus from them, the psychologist, and a family counselor we worked with that Tyler is bugging other children out of sensory seeking, not anger or aggression, and he physically can't tell when he's being too rough. This was comforting and helped me realize that he hasn't been improving because I've been targeting the behavior rather than its cause, a chemical imbalance. I'm constantly fighting the two disorders because if I give him calm activities, he can only last so long before he craves something with more sensory stimulation. If I give him stimulating activities for too long and without enough focus, it triggers his hyperactivity and impulsiveness, which is when he gets out of control and children get hurt. I have to constantly cycle him back between calm and stimulating activities to prevent his own energy from consuming him. I juggle this while also trying to care for the needs of a busy one and a half year old, so it's really put a lot of pressure on me. I feel like I'm the only one who can handle him appropriately, and it's exhausting! Tyler's always had these disorders, but caregivers were much more forgiving about his impulsiveness when he was only two years old, and now that he's bigger and stronger, he can do much more damage when he loses control of his body. They also hold him to a much higher standard than before because he's older and has better communication skills, particularly if they don't realize he's a special needs kid.

In the weeks leading up to the referral, I was afraid the school board would turn Tyler down because he doesn't have any obvious developmental issues and appears to be right on track with his learning. The speech therapist, physical therapist, and learning disabilities specialist all observed him and felt that their services would be unnecessary, but the psychologist and occupational therapist said they had many ideas on how they could help with the behavioral and sensory issues. They left us with the impression that he will qualify for special needs preschool, explaining what sort of things that would involve, like putting him on a sensory diet. The bad news is they needed to send me some more paperwork to fill out and submit, then they get 45 school days after receiving it to evaluate him in an environment around other children, then the preschool team has 30 school days to come up with their own plan on how they'll go about educating him. When you add that all up we're into June and by then school's out for the summer, so he wouldn't be able to start until September of the following school year. We'd finally found something that seemed like it could help him, but now we couldn't have it for 5 more months. I feared that I'd have 5 more months of needing to constantly hover over Tyler. I see his triggers coming far better than anyone else (including Oscar), and I can often prevent them from happening when no one else can. I'd hear about all these moms happily and successfully homeschooling their multiple kids of varying ages while I felt like I was drowning trying to teach one child the necessary skills to become a good person and a benefit to society. It was comforting to learn, though, that the reason behind my struggle was that I'd been attempting to educate a special needs child with zero training or expertise on how to do that or an appropriate environment to do it in.

Story to be continued in future posts...

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