Adventures of a Rock Star

Adventures of a Rock Star

This is for anyone navigating the world of special needs/neurodivergent parenting, IEPs, doctor and therapy appointments, or whatever else your world entails.

Our kids are all rock stars!!

*All are welcome; bullying and derogatory speech is not.!

Operating as usual

26/01/2024

A few updates:

*Magnesium lotion is the Holy Grail of helping with sleep issues. We have (for the most part!) been in our own bed...ALL NIGHT!!....for over a month. We think he was kicking the wall and waking himself up at night, and the lotion has seriously helped with the restless leg syndrome. Mom and Dad being sick with Covid mid-December helped kick off the success (He is a little bit of a germaphobe!!), but the lotion is sustaining it.

*Mid-year report cards came out last week. He is continuing to kick his IEP goals' butts and take no prisoners!!

*We are remembering, over and over again, that we are not dealing with a neurotypical child. He is just plain wired differently than we are. It is definitely a learning curve, but I also know that if he is on the ASD spectrum (medical professionals have yet to say the word, but signs point to yes!), wishing that away would make him a completely different person. Of course he has challenges. But he also has strengths. Just like any other human! It is so much fun to see him growing into the cool little human that he is becoming!!

07/11/2023

He wrote his first word besides his name. 不不

(He was just writing letters on his board, and we pointed out to him that he had just written a word. So being a 7 year old boy, he has been writing it all over the place now!)

I encouraged him to show his teacher, and he said, "No, that would be inappropriate." 不不

06/10/2023

"If he doesn't grow up to be an engineer or a construction project manager, I am going to be surprised!" -our speech therapist

It's true! 不

Our first IEP meeting is under our belts, and we are still crushing goals left and right. His gross motor skills have improved to the point where we are now onto working on 1st grade standards (within the first month of 2nd grade, so we are getting more and more caught up!)

He is settling nicely into 2nd grade....several new teachers this year (gym, music, and a new case manager, although we do community stuff with the K/1st grade one, so she still gets to stay caught up!) and has become much more flexible and accepting of new people.

Our focus is definitely not on "state standards," but on helping him be the best little human he can be. But his progress is encouraging!!

29/08/2023

It's been quite the summer!!

Getting ready for a new school year is always a little bit scary for a kid who doesn't love change, but we have our "meet the teacher" conference today, and he will find out which of his friends are in his class - so that will help.

Over the summer, my rock star....

*Had his tongue tie surgery (Which is really helping him rock his speech therapy and get better sleep!).

*Started expressing interest in reading and writing letters and words (Average age is 7, so it looks like we're right on track!!).

*Progressed in his counting skills. Like his mom, he is not too fond of math. 不

*Had a blast, because that's what summer is for!!

I know that time flies and kids grow up fast, but I am having a hard time wrapping my brain around the fact that I have 2nd graders now!!

Have a great year, everyone!!!

02/06/2023

School's out for summer!!

His final report card showed some great scores - 3s across the board in everything except math, gym and reading (3 = meets standards) with even one 4 (proficient) and consistent progress in the other ones.

I actually like this scale better than the "traditional" A-F scale. Because if a kid gets a 1, that simply means "Still learning/working on this." It is not a "fail" because you haven't grasped a random concept that some random person at the state level has decided that you should know by a certain age.

Kids learn and grow at different rates.

No, I am not a big fan of standardized tests either. And I say this as someone who always did fairly well on them. I am more proud of all the "Student of the Month" awards my kids have received this year for being the best in their class at demonstrating the core values. That's the important stuff!!

Pictured below: My rock star trying collard greens for the first time. It's safe to say he's a fan!!

23/05/2023

Celebrating the small things:

*Last week they were invited to a friend's birthday party. On the way home from school, I mentioned that we still needed to pick up a gift for her. He piped up from the back, "I asked her at lunch what she likes. She said Barbies. No trucks and nothing creepy." On his own, he initiated a conversation with a friend and asked her what she wanted for her birthday.

*We amended the IEP yesterday to reflect that he is NOT eligible for summer school/extended school year because after observing him this year post-break, they have found that he retains information well and is not likely to regress over the summer. I mean, we weren't going to do summer school regardless, because we think it's silly to punish a kid for learning differently than his peers, but it turned out to be a moot point!!

*He sat in kids' church on Sunday, listened and participated (see picture below - packing "blessing bags" for our homeless friends in the community) - even though we were teaching - he usually has a harder time when mom and dad are the ones in charge!!

11/05/2023

So let's talk meds:

Among some online circles, I have seen assertions that giving ADHD meds to your child is "turning them into a zombie," "expecting a kid to not act like a kid," or even "lazy parenting." Apparently all my son needs to focus during the day and sleep well at night is lots of fresh air and exercise (Oh, and in order to give him those things, I need to homeschool him and not "let someone else raise him.")

Sigh.

1. I am the one raising my children. I believe that all parents are homeschooling parents, even if we choose to "outsource" some of their academic instruction. Thankfully, we send them to a school that believes the same.

2. Until you have been up for three hours in the middle of the night - several nights a week! - with a 5 year old (after literally exhausting EVERY non-medical option, from skin brushing to essential oils to entire days spent playing outside!) who is crying, "My body is tired, but my brain won't let me sleep!" you really don't fully understand how medication can help.

3. If you've met one neurodiverse child (or any child, really!), you've met one. Small example: We encourage Gage to bring a stuffed animal or small toy to church on Sunday because it helps him stay in his seat and focus on the lesson. We discourage his brother from doing the same because it keeps him from sitting still and focusing. As I said to him when he complained about it, "It's almost like we're raising two different kids with different needs!"

4. Tonight, he toilet papered the stairs and his brother's room before bed because he thought it would be funny. I would put that in the category of "normal little boy behavior." He is definitely not an automaton or a zombie. Just a well-rested little boy who works hard and plays hard!

So this is a rather long winded way of saying that if your doctor suggests meds, please do not feel like you're failing your child! If they were diabetic and needed insulin, you would give it to them. If they broke their arm, you would bring them to the doctor for a cast.

Are there people who overmedicate their kids for the sake of convenience? Probably. But I feel like the vast majority of us want to see our little rock stars succeed and be the very best they can be!

(Pictured here in the glasses he picked out last week!)

19/04/2023

He made his own toast. Apparently I was not moving quickly enough, so he decided to do it "his way." Which includes buttering the bread with a fork because "knives freak him out!" and sprinkling enough cinnamon and sugar to feed a small family. 不不

The pediatric neurology chapter has been officially closed. The neurologist said she could possibly "see some ASD," but only a neuropsychologist can make the official diagnosis. But no brain damage or genetic abnormalities. We decided to read up and learn more about ASD, because even if we don't ever get an "official" diagnosis, it is clear that he is not neurotypical and it may help us understand a little bit more about how his brain works!!

Tongue tie: We are almost on the docket to get the release procedure scheduled!! Scheduling will be calling me to get it all set up. This could be a game changer - at least with sleep and speech difficulties!!

So that's how the rock star is rocking today!! He did amazing at his ENT appointment and dentist appointment today, and the transition back to his classroom was the smoothest one we've had all year. He just walked into the classroom like a boss, sat down, and joined the activity.

Celebrating everything.....

22/03/2023

Well, we are not a candidate for the laser tongue tie release procedure. Almost a year of working on building up the strength/stamina in his tongue has led the doctor to this conclusion. All the therapy needed to happen in order to learn that. Apparently if you are not an infant (where you can laser a tongue tie off before they know what's going on!) or an adult (who has the ability and impulse control to sit perfectly still through the whole thing!), the "perfect storm" needs to happen.

So we are going to need to have him go under. We have a consult next month.

On the bright side, the hospital takes our insurance, where most dental offices do not. And apparently removing a tongue tie helps improve speech, sleep quality, focus, balance, motor skills - all the things we are struggling with.

Everyone who comes in contact with my little rock star comments on what a hard worker he is!

But that light at the end of the tunnel just got a tiny bit more dim. We keep moving forward, though, doing the next right thing!

05/03/2023

EEG: No abnormalities.

Genetic testing: No abnormalities.

MRI (Which finally happened on the 4th try - fall was rough in our house!): No brain damage or abnormalities, other than some mild sinus congestion. First graders are walking petri dishes.

So where do we go from here?

Nowhere.

Other than working towards the tongue tie release procedure, which could happen (or at least be scheduled!) this week.

We will ride the ADHD train all the way to the station, because that is totally a reality! The ASD diagnosis may or may not stick. In the meantime, he will go to school, get the help/services he needs to keep moving forward, continue making friends, and live his life.

There are days when I honestly feel like I am not cut out to parent a neurodivergent child with delays. Especially at night when my sleep is interrupted. But as the old hymn says, "Strength for today and bright hope for tomorrow...."

And the future is looking pretty bright.....

09/12/2022

If you know me, you know that Parenthood is one of my "emotional support shows." I just finished my 4th or 5th watch-through of it, and you guys??

MAX GRADUATES!!!

The first time I watched it, I was in the thick of filling out adoption paperwork and I laughed and ugly cried my way through Joel and Julia's storylines (minus the separation, obviously!).

This last viewing, Max's storyline was the one that resonated. All the ups and downs of raising a kid who is not neurotypical. I smiled at his frank way of speaking, and his single minded interest in bugs, and then photography as he got older. His tenacity. The school field trip scene broke my heart, and I stood up and cheered when he said, "Screw Cedarknoll" (his middle school that was completely unsupportive of his and other students' IEPs).

And the series finale, when the flash forward shows him accepting his diploma and raising both hands in the air? So hopeful.

I know it's just a TV show (and I am SO thankful for a much better school that supports my rock star and actually values parental involvement in IEP decisions!), but it reminded me once again to celebrate the small things.

Let's keep cheering on all our rock stars - they are headed for great things!!

26/10/2022

So we are still working on the "trial and error" phase of getting the perfect dose of Ritalin. Apparently my little rock star tends to lose focus in the afternoon. The trouble is, giving him an afternoon dose (even half a pill!) totally messes with his sleep. One teacher mentioned in the IEP meeting, "But who knows? Maybe he just likes reading better than math!"

Last night...

Gage: Is tomorrow a school day?

Me: Yes, it is.

Gage: NO! That means I have to do MATH tomorrow!!

First of all, even though he is not my biological son, that statement proves that he is totally my boy! 不不

Second, it's important to remember that "out of the box kids" are still....well, kids!! With likes and dislikes. And I am living proof that there is no medication alive that will instill a love of math.

19/10/2022

So, we had our first IEP meeting of the year. And...great news!! Our little rock star has EXCEEDED expectations. His goal for intelligibility with his speech therapist was to go from 20% understood words to 40%. She did a speech sample at the beginning of this year, and he is at between 80 and 90%. Which means we can now understand almost everything he says :) . Let's clarify: YOU can all understand what he says - in our house, we have spoken "Gage" for a long time!!!

His focus has improved; his fine motor skills, name and letter recognition, etc. are through the roof.

Apparently we are experiencing a "nature vs. nurture" phenomenon, because, just like mom, he struggles the most in math and gym class (although with his DAPE specialist, he is at about the level of a 4 or 5 year old, which I honestly don't think I ever actually surpassed. So there's that!!).

Mini rant on labels and state standards: I understand that the state has to have some sort of standards for schools - I mean, teachers should have a goal that they are working towards. But ultimately, the state does not know my individual child. They don't see how hard he works, or how much he has improved in less than a year. They don't know when the light will go on with reading or basic math skills, or any such thing, and I refuse to label my child based on some arbitrary list. He is in the place he needs to be for now, because honestly, I have no idea how to catch him up (and he is totally one of those kids who responds better to someone else than his parents - home is and always has been his "safe place," where he can let loose and do what he feels like doing, and....well, good luck convincing him that it should be school.

But....year by year, kid by kid. Nothing is ever off the table. Some educational choices are very unlikely, but we never say never.

And we continue to celebrate the small moments. Like when he came home and told me that he and "another kid" were looking for rocks together at recess time. He couldn't remember the kid's name, and he is "maybe in kindergarten, or maybe a 3rd grader - I don't know." We cheer because he can finally write his name, unprompted.

How is everyone else doing now that the school year is in full swing?

08/09/2022

This morning (between 4:30 am when he woke up ravenous and when we left for school at 7:15), this boy consumed:

*a granola bar
*a bowl of cereal
*a muffin
*an applesauce pouch
*a yogurt tube

I think we may have hit a growth spurt. 不不

30/08/2022

That is Gage inside the tent. The little girl (only the back of her head, for obvious reasons!) is a new friend that Gage made at the library. Just now. She asked him if he wanted to play and he said, "Sure." They are pretending to be camping.

Interactive play and back-and-forth conversation with a peer. That he is not related to!

This is a huge deal. A major milestone. I am sitting here with my back to them because I am bursting into tears right now.

What milestones have your rock stars achieved today??

24/08/2022

Back to school time is upon us (Hard to believe!).

I was just reading a post on Instagram in which the author asked her followers to share why they chose public school for their kids, and then basically shot down their reasons. Sure, she was kind and even encouraging as she challenged people to step out of their comfort zones and consider an alternative such as home education, or, as she has done, creating a whole new Christian school/homeschool hybrid for her own kids and other kids. This parent even has a child with Down's Syndrome, so that is "proof" that one can do this even with a child with higher support needs.

So I just wanted to come on here and offer some encouragement to those (specifically within the Christian community) who have chosen a public or charter school for their rock stars!

I know you have agonized over your decision. I know the hours you have spent in prayer, probably rethinking and overthinking things, and worrying about things like bullying, or whether your child's teachers will actually follow through on all the things the IEP says they're supposed to be doing.

Believe me, homeschooling was going to be it for us. It is still not completely off the table forever. Our philosophy is "year by year, kid by kid."

But right now, my "out of the box kid" needs the structure and routine a school day provides. He needs professionals who are trained to engage him and help him understand things right where he's at. He needs the group dynamic that cannot be duplicated at home, and he needs his specialists to help guide him in learning to interact with his peers.*

*Homeschooling advocates will say that the advantage of home education is that kids learn how to communicate and interact with people older and younger than them. My kid already has that figured out. He needs to work on his peer to peer interaction.

As the product of Christian schools, I definitely researched that as an option. But most private Christian schools are woefully understaffed and completely unprepared for a neurodivergent kid. I found out through our former speech therapist that kids from the local Christian school who need services are sent to the local public school for support. As it turns out, that would put him on a bus or at the public school for most of his day!

In perusing their website, I noticed the emphasis they placed on test scores and where their students have ended up going to college. That's great. I won't get on my soapbox about standardized tests, or relying on those scores to prove intelligence or to qualify for more funding, but I will say that a school that wants to keep their high scores and reputation for academic excellence is probably not a great fit for a kid with learning delays.

So yeah. We did our homework. In fact, we visited the local charter school just to cross it off our list and provide more proof that homeschooling was our only option. When we got there, though, we realized that this was the perfect spot for both of our boys to land, whether for a few years, or as far as they can go.

So, public or charter school parent - I see you. I am there with you! Go with confidence, and know that God will equip you to lay a spiritual foundation for your child even if you are entrusting the academic part of it to someone else.

(And if you're local, please feel free to talk to me about our kids' school! :) )

Photos from Adventures of a Rock Star's post 13/08/2022

Today...

*He actually participated in the Parks and Rec sports program they've been in the past month. Without needing to be bribed with a treat from the Farmer's Market.

*When he went to get his tokens (Kids get $4 of free produce each week at the Farmers Market), instead of telling me to help him, he stated loudly and clearly, "My name is Gage."

*He chose to play with the other kids instead of helping me water our community garden plot. I lost my watering buddy, but it was good to see him playing on scooters and interacting with other kids.

We celebrate the small things here!!

09/08/2022

"I love you, Gagie!"

"I love you, Piercey!"

"Mommy, take a picture of us!"

Absolutely.

Even if you are going to be fighting in two minutes.

06/08/2022

So let's talk sleep. Are you getting enough of it? Is your child?

Settling down to eventually get him to fall asleep requires a long, involved bedtime routine that starts at 6:30 pm. On a good night, he is out by around 8:30 (There are exceptional days, but those are few and far between!).

Any deviation from our regular routine pushes that back an hour. Sometimes more.

Some evening experiences are worth it. Others? Not so much. We weigh each opportunity on the scale of, "How willing are we to upset the routine?"

The "P" part of my ISTP personality type grates against this. I naturally like to keep my options open and spontaneously accept a dinner invitation or run out to do a fun event, or even go grab dinner out when I am sick of cooking!

But sometimes it is just not worth the hassle.

If our family can't do something (especially on a weeknight during the school year!), we want you to know that we value you and don't want to say no (So keep asking!!) - but our desire to have fun in the evenings needs to be balanced with our son's need for a good night's rest.

Anyone else in the same boat?

What are your magical solutions to some of your sleep struggles? Ours are melatonin, prescription sleep medicine, and a fan - for white noise and because he doesn't like to be "too hot" at night.

05/08/2022

Let me know in the comments who I should be following! Here or on Instagram :) .

04/08/2022

My two boys, waiting for the bus and exchanging facts about koalas.

Pierce is definitely Gage's #1 advocate. Even when they were toddlers, if Gage was being corrected, we would hear a squeaky little "Don't talk that way to my brother!" They can be at each other's throats, but Lord help the "outsider" who comes at him. He is his brother's biggest cheerleader ("Hey, mom - Gage is doing really well with his counting!") and translator ("What he's trying to say is...").

I have been wrestling with a comment from one of the school specialists about how parents should be careful not to use kids as their sibling's paraprofessional. One one hand, yes. Kids need to be kids and not be saddled with adult responsibilities.

We remind our boys all the time, "It's our job to be the parents and your job to be the kids." This is why we rely on the paras, the specialists, and the therapists to help him get caught up and be the best version of himself that he can be.

But doesn't everyone deserve someone in their life who always has their back? No one has "arrived," and we all have milestones we are trying to reach. We all have successes to celebrate, and we all have areas where we need a little extra help.

I am going to keep teaching both of my boys to help each other (at an age appropriate level, of course!) and always be in each other's corner!

03/08/2022

Welcome, one and all!! This is just a little corner of my virtual world where we can talk about raising a "rock star" who is working overtime to do what may come naturally to other kids.

What we do here:

*Share helpful resources (books, tools, fidgets, music, classes, etc.).

*Share frustrations with navigating "all the things."

*Share successes! Did your 10 year old tie her shoes for the first time? YAY!! Did you finally say goodbye to pull-ups? Way to go!! We celebrate EVERYTHING - big and small!! **Our neurotypical kids are also rock stars, so if you have some of each, we want to hear it all!!

*I happen to be a person of faith, so we can also pray for each other :) .

What we DON'T do here:

*Talk politics. There are countless places to do that. Not here.

*Sell things. Example: recommending a calming essential oil blend that works great for your child? AWESOME!!! Trying to sign people up to sell oils for you? Not so awesome.

*Speak unkindly or use slurs of any kind. The late Maya Angelou used to kick people out of her home if they made derogatory comments. This is my virtual "home," and you will be kicked out for any kind of "ism" or "phobia" that you display. If you have to ask if it's okay, then it probably isn't.

Invite your friends - the more, the merrier!!

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