Mason's terrible, horrible, very bad day

I don't think words can describe the heartbreak of watching your child go through an extreme, destructive tantrum. The heart wrenching and actually physical pain in my stomach as I watch one of my greatest loves hit his head continuously on the wall or roll into walls overwhelms me. The desire to do anything to take his pain away leaves me feeling helpless.

Today has probably been one of Mason's worst days with his emotional regulation. It always hits when you don't expect it. He's had bad tantrums, but it's been months since an insane one. He almost always has an ok or good day at school. His teacher had just told us that Friday was probably his best day at school ever. Then a bad night of sleep happens. Other parents of autistic kids know that sleep for a kid with autism is like a roller coaster. Sometimes their little bodies and minds have a hard time settling even if they desperately need sleep.

As I woke up to feed Jonas at 2am, I heard Mason awake in his room. I knew that was a bad sign. He woke up not fully rested. His teacher said that he wouldn't stop crying or tantruming at school. I got a call from the school nurse saying that Mason wouldn't stop tantruming. He threw himself on the ground and hit his head pretty hard. She said that he wouldn't settle down and we needed to pick him up. Zach left work to get him. All I wanted to do was to leave work and take care of him.

Thankfully Mason was happy when Zach picked him up. Mason and his daddy had some nice snuggle time. Unfortunately, Mason couldn't fall asleep for a nap. His danced and ran in place happily in his room, but he would not sleep. Then he pooped. And took his diaper off. And had poop all over himself. And then has a bath. He has the best daddy ever.

After bath and relaxing with daddy and mama, it was time for bed. Unfortunately while in his room, Mason found and developed an obsession to a cap to a bottle that he had snuck in. We took it because it was a choking hazard. That's when all hell and destruction broke loose. Mason banged and pulled on the blinds. He yanked down his curtains. He pulled on the one shelf in his room. He pulled down his headboard. He tried to pull off the duct tape the tapes the two cords to the wall. He banged his head on the wall. He continuously threw a toy against the wall. He rolled off his bed. He kicked the wall. We watched. We intervened. We tried to keep him safe. We cried. We didn't give in to giving him the cap. Then he finally crashed after over an hour of insanity.

This is hard. I feel like that is the understatement of the century. All I want to do is the help him and take his pain away. I just want to help him communicate. I want to help him understand why he couldn't have the cap. If only I could help him process his emotions instead of him continuously trying to hurt himself. If it's hard for me to watch him struggle, I can't imagine how hard it is for Mason to try to navigate this world that doesn't make sense to him.

No matter how bad of a day he's had, the simple things that he loves make him happy. He will wake up tomorrow morning (after hopefully a good night of sleep) and give us one of his famous big smiles. He will give me a hug and let me hold him like a "baby." He will laugh and laugh at his favorite tv shows. He will babble goofy things and play silly games. And best of all, he will snuggle with us under his blanky with all his lovies. And I will take the happy moments. Then I will tell him over and over how much I love him. I will kiss the bruises on his forehead. Hopefully when another insane tantrum happens, he will have that love in his sweet little heart.

I asked myself if I wanted to share this with you all or if i just wrote this to help me process today. I thought about how this is autism awareness month. It's not "only bring awareness to the light-hearted, feel good stories of autism" month. I want to bring awareness to the reality of autism. The heart wrenching, difficult times as well as the beautiful times. Here's to the hope for a beautiful tomorrow.

Mason's Autism Testing

I remember the exact moment just over a year ago when I allowed myself to process the thought, "Maybe Mason really does have autism." It scared me. It overwhelmed me. 

We were just learning about the developmental delays he had in various areas and picking up on his sensory processing difficulties. We didn't know how to wrap our heads around everything we were learning.

A year later, I feel like we are in a different world. We have learned so much about development, sensory processing, and autism. We have also learned that we have so much more to learn! I am so thankful for Mason's teachers/therapists, our knowledgeable friends/coworkers, and the Internet!

I'm no longer scared or overwhelmed by an autism diagnosis. It's just a label that he may or may not get. It's more about being able to see and experience the amazing personality that Mason has. It's about learning how to help Mason grow and learn in a way that works for him. It's about sharing Mason's joy with everyone he gets to know.

Today, I received the call scheduling Maosn's autism testing at Helen Devos. It will be on April 9. Getting the call made me reflect on the past year. I'm so happy with how far we have come in the past year. Less fear, more knowledge and support.

Mason's OT shares the following chart with me. The "alternative view" really made sense to me on viewing people with autism instead of looking at them with the negative "assumptions."

And of course a few cute pictures of Mason:

Mason update: being a big brother, hard time dealing with emotions, parent/teacher conferences, OT appointments

Mason is now a big brother to baby Jonas! He has done well at the beginning of this transition. When we were at the hospital, he had a tough few days at school. His teacher said that he would just get upset and frustrated easily compared to normal. Thankfully, we were able to come home from the hospital the day after Jonas was born. I think this helped Mason feel a little more normal. Jonas has not been too fussy these first 6 weeks, which has also been nice for Mason to get used to having a baby around. Mason will come to the baby and say "hi baby" a lot. Sometimes if I'm holding baby J, Mason will point to the baby then point to the baby swing and say "sit." It's his way of telling me that he wants to play with me and not have me hold the baby. I'm thankful he has figured out a way to communicate this with me even though he isn't always patient if I can't put the baby down. Lately he has really liked it when baby Jonas is in the car seat. He like to say hi a lot then and he always makes sure the car seat is coming with us. When he left for school today, he tried to pull the car seat with even though baby wasn't come with him. Other than that, Mason generally ignores the baby like he tends to ignore many other kids. Mason has been great at school again in the last few weeks, which shows that he is feeling more normal. I'm glad this initial transition has gone well.

Lately we've been noticing if Mason sees another kid cry (like really cry not just kind of cry), he stares intently then starts crying himself. It's not a normal Mason cry or a tantrum, but it is extreme sadness and crocodile tears. His teacher says it happens at school, it happens at daycare, it has happened a few times around his cousins, and of course it happens with Jonas. It's so sad to see his big blue eyes look to me in confusion then he just starts belly crying. It's like he doesn't know what to do with the sound or with all of that emotion that someone else is feeling. I wish I could explain and help him navigate some of those difficult emotions. It's important to be aware of others' emotions, so it's a good thing that he is slowing down enough to notice others around him and their emotions. The tough part is how to help him understand and normalize their emotions. It's hard helping Mason deal with his own emotions since he is limited with his communication, but I had never really thought about how to help him navigate the emotions of other people.

We had Mason's parent/teacher conferences last week. His teacher said that she loves Mason's big smile and excitement over certain things. It was great to hear about Mason's progress. We are pleasantly surprised with how quickly he is understanding and adapting to the routine. His teacher said that he really picks up on things quickly. He is starting to use more words in the classroom, using his utensils better, accomplishing certain skills, and participate more in classroom activities. One of the big things is that he is starting to recognize pictures of himself. Every day he has to take his picture off the wall and put it onto the picture of school. He has just started to search for his own picture (instead of just taking a random one off the wall) and putting it on the school himself instead of the teacher telling him to do it. We are glad that he is noticing and participating in these little routines and tasks because it will help him visualize his day and deal with transitions. I (of course) asked a lot of questions about everything. One big thing I found out is that he may qualify for summer school because he is at a critical learning point, and they don't want him to lose any skills that he has developed.

Mason's OT appointments have been going really well lately. Zach had been taking him while I was on bedrest and just after Jonas was born, but I was finally able to go with him again last week. Mason has been bringing smiles to many people there. It's fun to see him be the Mason we know and love in other settings. If you know Mason, you know that when he's excited about something, he's not quiet about it. When walks into the OT waiting room, he walks around looking for his therapist. As soon as he finds her, she asks, "Mason are you ready to go back and play?" Mason always happily screams, "Yeah!" Then he dances around and runs back. I may be biased, but it's the cutest thing ever and can bring a smile to anyone around him. During the sessions, Mason has been getting stuck in a routine with play during his appointments. His therapist wanted to push him and took him to a new room to try to incorporate new ideas. Mason struggled with the transition, but his tantrum only lasted 8 minutes. Remember back to his early appointments where his tantrums would last almost the entire sessions? I love that his therapist is not afraid to push him and help him through his tantrums because that is going to help him so much more in the future!

Mason's first 3 weeks at preschool and preparing for his baby brother

I thought I would be blogging more since I've been on bedrest, but I find my brain a little more foggy than usual. The end is in sight as I am being induced on Wednesday. As much as I have hated being on bedrest, I am grateful for some things that bedrest has allowed me to do. I've been able to spend a lot of time with my sister-in-law Erin, niece Helen, and nephew Bo since they have and will be watching Mason most days (and they've been taking care of me). Besides feeling closer with all of them, I think it's helped Mason transition to this new change in his schedule better. Even though I'm not bringing him to school or taking care of his every need, I'm around him as others are taking care of him. This week will be the true test of how he does with the new schedule and with me not around.

Mason has done so well at school these first three weeks. He seems to love his teacher and blows her a kiss every day as he leaves. He even runs right into his classroom without a backwards glance at Zach, grandma, or grandpa (who takes turns dropping him off).  We've gotten some notes from his teacher and speech therapist on different days. Most days he has participated fully and enjoys most activities. Mason has a lot more "words" lately, but they want to work on the quality of his sounds/words. Here is a note from his speech therapist after a cool activity last Friday that integrated all the different therapists and teachers: 

We really have noticed a lot of improvements at home too. I wish I knew all the strategies his teachers/therapists know! I never knew how many strategies there are to help kids learn who learn differently than normal!! The biggest area we've noticed improvements in is communication. It's such a broad area to explain and some of the improvements are hard to explain unless you experience Mason every day. We definitely notice him following our directions more and he tries to communicate more. For example, we FaceTime with a lot of people but especially his Aunt Jenni, Uncle Lucas, and cousin Phineas in Seattle. Normally, he either ignores the fact that we are trying to get him to say hi/wave to them or he tries to take my phone to play games. This past week, he sat down to look at Aunt Jenni, he pointed and said "baby" to Phineas, he waved and said "hi," and he (kinda) blew a kiss. That was so impressive to see him not only follow directions to say/do communication tasks, but also do it over a FaceTime call.

I've been thinking and appreciating some of my favorite Mason-isms as I get closer to delivering his new baby brother. Thinking of this big life change for our family has made me feel nostalgic. One of my favorite things about Mason is when he experiences his happiness to the fullest. He has no shame, thought, nervousness, or social norms that he thinks about when experiencing any emotion. When he is getting annoyed at me laying on the couch, he pulls the blanket off of me and tries to drag me by the hand to play trains with him. Then I ask, "Mason, do you want mama to come play trains with you?" His response is the purest, most joyful, "Yeah!" This is just a simple task that I was able to put words to where he felt acknowledged and understood. I love hearing his "Yeah" for all the little things he gets excited about. I have said it before, but I love his happy face and huge smile while he's on the swing. You know you are seeing Mason when everything is right in his world. It's relief, stress-free, joy, and  peace that he is experiencing. I love experiencing his happiness with him because it feels like I am giving him a gift of making sense of the world around him. Now, I will add that the flip side is that we get to experience the full brunt of negative emotions, which to say is challenging is an understatement. It's painful to feel helpless in how to help him make sense of consequences and so many general life experiences.

We are excited for meeting baby boy McCurdy this upcoming week and hoping that this transition goes as smoothly as possible for Mason. Before I went to the hospital to have Mason, I remember looking at our old dog Maggie and thinking, "How can I love a child as much or more than I love my Maggie." Nothing could prepare me for the love I feel for Mason. Now I sit and think, "How can I love another child as much as I love my Mason." I can't wait to be overwhelmed by the all-consuming love for this next son.

Preschool has started!!!

Mason is starting his second week at Ken-O-Sha preschool. He has 7 other kids in his class with 4 adults.  Our entire routine has changed. My amazing sister-in-law Erin has been coming to our house to take care of Mason (and future new baby) as well as her own two kiddos four days a week. Mason still gets to see his wonderful Miss Patti one day a week. We decided against using the bus to take him to preschool at this point because he would have to be on the bus for over an hour each way. My parents, Zach, and Erin have all adjusted their whole schedules to help get him there and back. Don't I just have the most helpful, amazing family ever?!

Mason has adjusted better to preschool than I ever hoped. He's had a few rough drop offs where he didn't like seeing Zach or my parents leaving, which is totally normal. His teacher has said that he is learning the new routine quite quickly and starting to watch the other kids to see what's going on. He's starting to participate in the activities better instead of just sit in circle time for a minute then leaving to do his own thing. They did ask for ideas on what works for him when he enters his crazy tantrum zones. Last week, they were excited because he said a few words that they asked him to say. Today, they said he made it through the entire day without one tantrum!

I'm so happy that he has done well with this transition. He's excited to see his teacher and even blew her a kiss goodbye the other day. I can't wait to see how much he grows and develops there with teachers and other adults who are trained to help him learn in the best way for him. I'm sad that I can't pick up, drop off, or spy on the class. I totally want to be a helicopter parent. 😊 Letting go is hard!!!! 

Why the kittens have been awesome for Mason

5. Distraction

When Mason gets his mind set on certain things, there are not a lot of ways to change it unless you want a 30 minute insane tantrum. It's really not fun setting boundaries for him (true for most toddlers!). There are a few high value distractions that sometimes work: Mickey Mouse, seeing grandpa Ron and grandma Ginny, chocolate milk, fruit snacks, and the kittens!  It's nice having another high value distraction that doesn't have to rely on TV, people who may not be home, or sugary drinks/food.

4. Slowing down and noticing
One thing all of Mason's therapists talk about is helping Mason slow down enough to notice the world around him. He walks on his toes and his vision is usually looking upwards instead of around, which causes him to be clumsy and to not notice where he walks. Mason is also not very aware of how he could hurt other people by stepping on them or hitting them too hard.  Since the kittens are of high value to him, he tends to notice when they are on the ground around him.  He wants them to stay by him, so he is learning that if he steps on them, they will run away.  He is also figuring out how to touch them more gently.  This helps him TREMENDOUSLY.  We were at his daycare Christmas party with a lot of other people, I watched him notice multiple people on the ground and he walked around him.  This may seem like a little thing, but with a new baby brother coming, we need him to notice people on the ground. Obviously, his other therapies have also helped him in this area, but I really think the kittens have made a big difference.

3. Lower stress
There have been many studies about the emotional benefits of having a pet.  I know that having pets have always made me happier.  Since Mason's physical body is under constant stress, these kittens always bring out Mason's happy voice.  If I hear Mason jabbering from another room, I can tell if he is "talking" to the cats.  He has a certain happy voice that he only uses with them.  The other day, my wonderful friends from Minnesota were visiting and pushing him on the swing. The kittens were sitting on a table directly in view. For a good 5-10 minutes, he happily said "Kiiiiii" over and over again. It made it hard to talk with my friends, but it makes my heart happy to hear him be so happy.

2. Communication

Every time we see a person or leave a person, I still try to get him to acknowledge or say hi/bye to them. He does it sometimes. We ask him to point to things or name objects, he sometimes does it. Whenever we ask him to point to the cat's nose or something else about the cat, he always does it. He always says "hi" to the kittens and sometimes tries to give them milk from his sippy cup. It's awesome to see consistent communication!

1.  Love

What is more important that giving your child something to love? One of Mason's therapists said that for him (and others like him) animals can be easier to be around because there are less confusing expectations and emotions for him to deal with. I love that he has two kittens that bring him such joy, comfort, and love.

December McCurdy update = stress, commitment, development, STRESS, anticipation

December has been a busy month for us.  I've been really exhausted, so the goal was just to make it through healthy.  Unfortunately, Zach got the flu and was sick for almost a week.  On top of that, my blood pressure rose.  Since I had preeclampsia was Mason as well as a second trimester miscarriage, we were obviously quite stressed about it.  It rose high enough where I had to go into the hospital. Thankfully, it lowered enough to be discharged and my other labs showed that I did not reach the danger zone for preeclampsia. I've been laying low to try to keep myself and baby boy healthy.  My doctor's appointment and ultrasound in two days will hopefully show that things are still going well.

Mason only had one speech appointment before our speech therapist had her baby and left on maternity leave. She is really pushing us to use more pictures/visuals with him.  One of the hardest things in communicating with Mason is to help him mentally prepare and comprehend situations when his verbal communication is quite low.  He loves routine because it helps him makes sense of this world that his body and mind can't make sense of, but unfortunately, life does not work as a perfect routine. It's hard to know what he has mentally prepared in his head, so it's hard to predict when he will have a melt down because his mind was thinking something different.  For example, we went to Costco this morning instead of our usual Meijer routine.  As soon as we turn in the parking lot, it was major meltdown. We had told him that we were going to Costco, but he didn't comprehend it until we were in the parking lot. Using pictures could help us and him with this communication gap. The technique hasn't felt very successful with Mason yet, but I need to push myself to keep working on it.  As with any technique, repetition is key.  I sometimes see his therapist keep repeating a phrase or action, and I think, "There's no way he is understanding or following through with this." For example, Mason would try to climb a ladder with a ball in his hand every week, and she would repeatedly tell and show him to give it to her before trying to climb.  He never followed through. This week he finally gave the ball to her before trying to climb.  It may have taken months for a simple task, but repeating things verbally and visually is so key to helping him.

Mason had rough OT appointment at the beginning of the month, but he ended on a good note with both OTs.  He was really just disregulated for no real reason at the appointments.  Sometimes I can figure out that he is disregulated because he is tired, hungry, had a different idea in his head, etc.  He was just off.  He didn't really follow through with his ideas and wouldn't listen to other ideass. That means that he wouldn't really play with anything well, which can make it difficult to have a productive therapy session.  One of our OTs said that there have been such big steps in his communication that it can cause some disregulation because he of big changes.  He has also been asserting his independence and voice more, which is great developmentally but not nice with his regulation.  The OT place where he always has a meltdown just changed buildings.  Overall, he is doing much better with new buildings and places.  He is still nervous but does not have major meltdowns. I think the change of buildings was really good for him.  I wonder if he was always triggered with negative feelings at the old building, so he was able to create a new normal at the new building.  Hoping that we are continuing on a good wave of appointments after the new year starts.

The absolutely BIGGEST stressor for Zach and I right now is Mason starting preschool.  It is a change in almost every routine that Mason currently has in place.  He only be going to his current daycare one day a week.  Zach and my mom will be transporting him to and from preschool on those days. My amazing sister-in-law will be bringing her two kids to our house and will be watching Mason the other four days of the week.  He will also be riding on the bus to his preschool these days. Because there is no way to communicate these HUGE changes in routine to Mason, I know this will be VERY hard for him.  He will be on the bus for around 50 minutes each way. Honestly, I cry whenever I think about it, and I'm not a big crier.  He is familiar with his school since we have been taking him there for speech therapy sessions.  He has met his teacher and parapros, but he does not know them.  I am confident that this will be a great experience for him, and he will grow so much.  I am so excited about that.  I am absolutely torn up inside about watching him be so confused and upset about it all in the beginning. It's painful for any parent knowing their child is in pain (physically or emotionally) without being able to do anything about it.  That's how I feel about January.  I hope he adapts to the changes quickly and then looks forward to his new routine because having a new baby brother will be another rough transition for him.

Thanks for checking in with us. We are taking everything day by day!!