Mason update - Fall 2015

It's been a good fall for Mason. We are finally finding a groove with our schedule.

He has a busy schedule:

Monday his new nanny (an OT student) watches him from 6:30-9am then she brings him to ABA (applied behavior analysis therapy) with therapist Zoe from 9am-12:15pm. Then my mom picks him up, feeds him lunch, and drops him off at his preschool. I pick him up at 3:15pm.

Tuesday my mom watches him from 6:30-9am then drops him off at ABA with therapist Erin from 9am-12pm. Aunt Erin picks him up from ABA and feeds/watches him until 2:15pm. Then Zach picks him up and brings him to occupational and speech therapy sessions at Family Tree until 4:15pm. 

Wednesday my mom watches him from 6:30-9am then she brings him to ABA with therapist Zoe from 9am-12:15pm. Then Zach picks him up, feeds him lunch, and drops him off at his preschool. I pick him up at 3:15pm.

Thursday his nanny watches him from 6:30-9am then she brings him to ABA with therapist Erin from 9am-12pm. Then my dad picks him up, feeds him lunch, and drops him off at his preschool. I pick him up at 3:15pm.

Friday his nanny watches him from 6:30-9am then she brings him to ABA with therapist Zoe from 9am-12pm. Then my dad picks him up, feeds him lunch, and drops him off at his preschool. I pick him up at 3:15pm.

As you can tell, it takes a village!! We are thankful for all the people who help us get Mason to all his therapies and school. 

ABA has been going awesome! They send us videos of his sessions weekly, so we can see what they do. The goal is to increase or decrease targeted behavior by rewards (food or praise). There are MANY different skills they are working on at once then they mark if he does the skill correctly and how often he does it correctly. They are working on having him label colors, body parts, animals, etc. They also work on him making certain sounds, requesting items, and follow commands (like give, put in box, sit down, turning to his name, etc). These are all skills that neurotypical kids just naturally pick up on and learn by watching, but kids with autism learn so differently. He has two new therapists this fall who seem to be great. The one that video tapes the seasons is so wonderful and bonds so well with Mason. It's fun to see him enjoy working with her. It's definitely still feels awkward for me to watch. It's fast paced repeating a request and giving a reward. I think it's just awkward because it's much different that how we are used to watching kids learn, but he is making progress! I am so proud of how much Mason has learned so quickly! At his review with his BCBA (person in charge of his therapists), she said that she is impressed at how quickly Mason learns his skills. She added that as she has worked with Mason longer now, she knows how to motivate and teach him more. If he wasn't learning a skill, she knew they had to adapt how they taught it because he is smart enough to get it quickly. He has also retained every skill that he has ever learned there. She said that is rare. It feels good that others can see how smart and special our Mason is. I appreciated that she adapted the programs to fit Mason instead of making him fit into a box. This week they told us that they started new programs/skills, and he has already mastered out of some.

School has been going great as well. He has his same teacher and room as last year, which made the transition smooth. He really loves his teacher and therapists a lot. It's fun to watch him get excited to see them. We had his iep last month where he is continuing to make goals with communication, social skills, and physical therapy. They are working on having him communicate what he wants in various settings. The physical therapist also sent us to an orthotics specialist because of his toe walking. The tendons in his legs are tight, and they don't want them to be so tight that he loses range of motion in his foot/ankle. We are waiting to hear back from the specialist right now. At school, he does so many fun activities whether it's young athletes, playing in the sensory room, doing crafts, working on playing side by side with other kids in his room, playing outside, and so much more. Overall, I think he's had a great start to the year.

We decided to continue with his speech and occupational therapy sessions at Family Tree even though Mason has to miss one day of school a week. We were super sad because his OT left, but he has been doing well with his new OT. His speech therapist there is amazing as well. She has a skill of being able to push Mason to do new skills without completely having him meltdown. And if he does completely meltdown, she pushes him to get past it and continue on. Zach has been taking Mason to most of these sessions since his job let him leave early on Tuesdays. Besides the fact that his therapists there work great with Mason, Zach and I love being a part of his sessions. I think we have learned soooo much about sensory integration, apraxia/dyspraxia, autism, and so much more from his therapists. We have also seen how they work with Mason, so we can apply it at home. This is absolutely invaluable knowledge for us!! While ABA and school have been really helpful for Mason to grow, we can't go with him and learn along with him. What I have learned while being a part of the sessions is not something an autism parent class or reading online could teach me. I think it's important for parents to be directly involved in the therapy process somehow to know how to work with your kid with autism.

The last big update about Mason is that we are applying for a Paws With A Cause autism

Service dog. I had to apply to get the application, which we are working on completing right now. It can be a 2 year process to get a dog, but we are sooooo excited about what a service dog could do for Mason! We have already seen benefits from our cats, so I know a service dog could help so much more. Whether it's helping with transitions, adjusting to new locations, or helping maintain emotional regulation, having that constant, calming presence would be helpful for Mason. Another reason it would help is with Mason's potential wandering. We have our eye on Mason pretty much every moment, but at times that's not always possible. If Mason would ever get out of our house or sight, he doesn't always turn to his name and has no concept of potential dangers. The other night we were in our backyard. I ran into the house for a minute then checked back outside, but he had figured out how to open the gate. I ran out to look for him, and he was already in a neighbors backyard five houses down. He has almost figured out how to open the deadbolts on our house doors as well. As he gets older, it's one of my big concerns. Hopefully a service dog can be beneficial for him in all these areas.

Hopefully Mason continues to grow and enjoy his therapy and school.

A letter to my Mason on his 4th birthday

To my dearest Mason on the eve of your 4th birthday,

As I start cleaning for your birthday, I have so many thoughts about you and that I want to share with you! I think of the first moments of your life. I think of the indescribable love that was born with you. I think of your laugh and smile which can light up a room.

Then suddenly I get angry because I think of your autism. It's taken away your voice. I don't even know what you want for your birthday party. I don't know what gifts you want. I don't know who you want to come. I don't know where you want to go. I don't know what cake you want. I don't know what you want to wear. I don't know what you want to do. 

Autism given you more to overcome than any 4 year old should have to worry about. You have to deal with hours of therapy. You have to deal with more stress physically and emotionally than many have dealt with in their lifetimes. You have to deal with a body that doesn't always respond to what your brain wants it to do. You have to deal with the sadness you feel after your body reacts by hitting your mom when you're overwhelmed. You have to deal with learning completely differently than the norm. You have to deal with people who don't understand you or think less of you, which may make them fear you. You have to deal with sensory needs that make it difficult for you to calm yourself or focus on what you want. You have to deal with your body or brain that doesn't allow you to get the sleep you need for the day. You have to deal with the dyspraxia that doesn't allow your body to do what you want. You have to deal with a limited ability to communicate, which affects every single moment and relationship in your life. And sadly, you have to deal with so much more than I can even list off the top of my head.

Sometimes I think of what I would do if I had to deal with everything you dealt with for one day. I can't even imagine how I would deal. All I know is that I would probably not be smiling as much as you do.

And as I clean for your party thinking all these thoughts, I start to wallow in self-pity. Then I hear you giggling to Mickey and repeating all those words from the show. I realize that you don't wallow and feel sorry for yourself. You deal with everything autism has thrown at you. You have more strength and courage than anyone I know...and you don't even know it. You just deal with it. If you deal with it, I can deal with celebrating your 4th birthday by giving you what I figure you want because I know you even though you don't have a voice yet.

For your birthday, you have a kitty cake that you loved, you watched a Mickey Mouse, you got gifts of trains/puzzles/marble run/scooter/train table, you will get to climb & go downs slides at a play place in the morning, and most importantly, you will be surrounded by people who love you unconditionally.

I write this to you because I see the way you deal with all of your obstacles and are gaining steps in overcoming them. That will bring you to a day where I believe you will be able to read this and be able to talk to me about the day you turned four. The day where you inspired me to have even half the strength that you have. My Mason, you are amazing. Happy 4th birthday to you.

Love,

Momma

Simple conversations can have so much meaning.

Simple conversations can have so much meaning.

When I picked up Mason from school today, one of his summer therapists chatted with me for a few minutes. She talked about how she has only worked with Mason for five weeks this summer, but she is so impressed with how much his speech has improved. He's vocalizing needs, labeling things, following verbal directions, and just verbalizing so much more since the beginning of the summer. She also mentioned that his behavior is really good. He has very little disregulation unless another student is crying. I told her that during his first at-home speech therapy and OT sessions, he would sometimes scream for 45 minutes of the appointment. She was surprised and impressed at the growth in the last year. She then told me that she looked at his IEP and saw we will be updating it in October. She told me he already meets his goals that were set. Then we talked a little about the next few years. She mentioned that since he has a November birthday, he will have two more years at preschool. She said that with a lot of growth, he may even have the skills to go to his home district for their special education services in the next few years.

It was a great conversation to have. I have a lot of great conversations with his therapists and teachers a lot (and of course hard conversations). As a teacher, I sometimes think nothing of updating a parent on little things. It's great to tell a parent good progress, but I don't always think of the impact it could have. As I was driving away processing the conversation, I was tearing up and trying to figure out why.

One of the harder things for me with Mason's moderate autism diagnosis is the lack of a true prognosis. Even the testing they do doesn't really tell a full, true story. For example, Mason may have measured at a 21 month level of receptive communication the last time he was testing. The issue is that in some ways he is much higher than a 21 month old and in other ways he is much lower. Now while a gap is true of all kids, I believe that kids with autism are going to be much more extreme with this gap. I've come to accept that no cognitive test or ranking is ever really going to be able to tell us what Mason knows. Because the neurological part of autism affects the brain and body's communication, he may not be able to show a lot of his knowledge. Again while this is true of many kids who don't test well (I see it with my students), I think this is even more extreme for nonverbal and low verbal kids with autism. If Mason is asked to point and say numbers, he will probably not be able to show it on command. Let me tell you, I have seen this kiddo say and point to many numbers when his body and mind are in a good place. (More on this large topic/soapbox another day 😊.)

All these thoughts led me to think about Mason's future. I'm a planner and a future thinker, so it's always in the back of my head about what Mason's future holds (like many parents think about). I don't know if he will need to live at home forever, if he will need 24 hour care, if he will need an assisted living situation, or if he will be able to live independently. That's a pretty wide range of possibilities. I obviously hope for him to have an independent life. Hearing from this therapist that he made so much progress in the five weeks that she saw him and that in a year or two maybe he could go to his home district, gave me a little piece for future hope. I don't know why this conversation did that for me today, but it makes me think about the impact of words to others. Whether those are the words I use talking to my students, the parents of my students, my friends, my family, or especially the words I use with my non/low verbal child with autism. What you say is important. It can be mind altering and life changing. 

2015 Summer Living - Mason update

There are a lot of happenings in Mason's life this summer, but I have not had a lot of time to write about them.  Why did no one tell me that two kids is a lot of work? (= Oh wait, I have heard that just a few times before.  Props to all you parents with more than two kids!! I don't know how you do it, but I am impressed.

Mason has had a really good summer.  He's has improved in his emotional regulation tremendously in the last year.  I love seeing more of my sweet, goofy boy and less of his disregulation tantrums. The biggest issue we are dealing with right now is still his sleep.  We have been using melatonin, which helps him fall asleep great!  It used to take him 1-3 hours to fall asleep.  The major problem is that he wakes up around 2-3am and sometimes does not go back to sleep at all.  That's when we get great pictures like this:

Just checking out the neighborhood at 1:49am.  Unfortunately, his lack of sleep affects his focus, regulation, and stress.  I feel awful when I don't sleep well, so I can't imagine being up for hours every night then being expected to perform at therapies all day all while working on overcoming a difficult neurological disorder! What a difficult thing to do for this happy kiddo.  We are going to try the time release melatonin tonight, so hopefully that makes a difference.  I wish I had known about it before though!

This summer Mason is continuing to go to Ken-O-Sha for his preschool. He will have 5 weeks total there spread over the summer. I was (of course) nervous of his transition to a different teacher and different room, but he surprised me and seemed to make that transition quite seamlessly.  We have loved every teacher and therapist that Mason has ever had at Ken-O-Sha, so I feel quite grateful for his positive start to school.  He is definitely vocalizing more than he used to for us at home and his teacher/therapists at school have also noticed it. The biggest behavioral issue he has at school is that he has a meltdown or hits/throws things when other students cry.  We see this at home a lot too when Jonas cries.  I don't know if it is a sensory sound that bothers him, if it is an emotional overload from others that bother him, or if it is something else entirely that bothers him about it.  His teacher said that it is getting better where he only cried for 10 seconds or so the other day when a girl in his class was crying.  At home, he is better than he used to be, but still throws things or tries to hit Jonas way too much when he cries. Mason actually loves to say hi and gets so excited to see the baby whenever I pick him up from school. It's super cute since he always puts his head in Jonas' carseat to say "baby!"  As long as Jonas is happy, Mason loves the baby. But as soon as Jonas cries, watch out for a double child meltdown.

Mason is also still seeing his Occupational Therapist and just added a Speech Therapist at Family Tree Therapies.  We can't say enough good about everyone at Family Tree. Besides helping him grow, they have taught me a lot about autism and loved on Mason. Since we want to start potty training soon, our OT has us working on some exercises to help his body be able to "go" on the toilet. These are things I didn't even think about Mason needing to work on!  I thought it was just a behavioral thing Mason needed to learn, but I am learning that there are definitely body issues to address as well. For example, when Mason sits (like he would on a toilet), his hips are turned so he doesn't engage his core muscle like he needs to in order go pee. We have been working on moving his hips to help him, but he doesn't last long sitting like he should since he has to increase his core muscle tone. This is just one of the many exercises that we are doing (and some that we forget to do :)).  This is my interpretation of what she explained to me, so any OTs out there reading this can correct me if I explain things awkwardly.  In our sessions, we are still working on many other things to help his body. Here is a link from an OT that explains muscle tone much better than I do: http://www.ot-mom-learning-activities.com/muscle-tone.html

We just started seeing the Speech Therapist there in June (since his speech is emerging a lot right now, we wanted to increase his therapies this summer since school is limited). She is amazing, and I especially love watching how she engages Mason. She is very good at setting strict expectations for Mason's behavior and enforcing it in such a nonthreatening way that he has less meltdowns than he usually would. One example is that Mason got stuck in a cycle of wanting the lights off during every therapy session.  If we would turn the lights on, he would turn them off or meltdown.  Watching her demeanor and how to spoke to him really helped me feel more confident on how to stick with my expectations of Mason.  We are also working on turn taking games where he has to wait for his turn and (try) to watch us communicate that it is our turn.  Mason has done well with this at certain times and struggled other times. She has noticed and told us how quickly Mason can learn certain skills when he is in the right place.  We started working on Mason putting his hand out face up when he wants an object instead of just grabbing it.  He picked up on it very quickly and does it unprompted many times now.

Our ST also brought up the idea of using an AAC (Augmentative and Alternative Communication) app for Mason. Basically this can help Mason communicate his needs by pointing to pictures on an app. It will increase his understanding of the communication process, which will hopefully help him gain confidence in communicating then will lead to him talking more. Before I knew about autism, I thought speech therapy was all about helping someone talk better.  Now I see that in order for someone like Mason to talk, he has to understand the communication process in general. I'm excited to try this with Mason because I feel like he is at a great point to start using it.  This is just the tip of the iceberg in explaining/understanding communication and AACs, so again, any ST can correct me or add anything if I explained it awkwardly.

The last therapy that Mason has added this summer is ABA (Applied Behavioral Analysis).  This is the main therapy used for people with autism. The goal is to teach useful and appropriate behaviors starting with the basics.  He just started this in July and goes every day for 3 hours.  The first goal was for Mason to bond really well with his one-on-one therapist, so that he is excited to come and play/work with her. He seemed to bond quickly with her.  The next goal they had is to request what he needs by pointing (they call this manding).  They are also working on him imitating sounds and actions.  Bascially, they have a toy/food item that Mason wants, and he does not get it until he points to it or imitates the sound/action.  At first they would just move Mason's hand into the point or action (fully prompting), but they are just starting to make Mason himself without prompting him.  Mason had a hard time with that yesterday and hit/had meltdowns a lot during the session.  It must be tough pushing him enough to get results but not disregulating him completely where he shuts down.  His therapist is happy with how he is doing so far.  The more Mason accomplishes these basic behaviors and when he will follow commands, then we can try to get him to do more complicated behaviors...like potty training. I'm going to be honest with you all though.  I totally see the importance and necessity of ABA therapy, and I am excited to see the progress in his behaviors.  His therapist is wonderful, loving, and treats him with the utmost respect as his own person. The difficult part for me is that it feels like you are training a dog.  When you train a dog to sit, you prompt/show them how to sit then give them a treat/toy.  Then repeat.  Like I said before, I get why it is important and necessary. It's already hard enough to emotionally deal with everything that having a child with moderate autism entails that when you feel like the therapy is similar to training a dog, it just doesn't feel good. I just had to get that off my chest. Maybe my ABA friends can give me more insight since I just understand the basics of ABA thus far.

We did have a week break from all of the therapies, which was necessary for (my) sanity.  My whole family stayed at a cottage in northern Michigan for a week.  He was able to spend time with grandpa/grandma, aunts/uncles, and cousins. Mason loves swimming, so he was able to swim most days.  We even went to Avalanche Bay water park where he went down water slides for hours.  It felt good to be with family and be on a lake.  Mason did really good with the big change all week. He did have one incident the first day though.  The biggest issue for Mason is learning boundaries in a new place.  He explored the cottage and we got him settled in his own room (thanks to my family for sacrificing so Mason could have his own space). He was relaxing in his room, so I went to our room next to his to unpack a little.  I checked on him a minute later and he was gone.  I freaked out, yelled to everyone else, and ran off looking for him. I saw him a few minutes later walking on the dock towards the water and onto the boat. Thankfully, we caught up with him there safely.  The sliding doors of the cottage stayed locked, and he had no more scary incidents the rest of the week.

It's a crazy ride figuring out the best ways to help our Mason grow, develop, and overcome so many challenges that autism brings him.  I feel good about what we have put in place for Mason even if it is hard and exhausting at times.  I hope this helps you understand a little more about what it is like to parent a child with autism.  I also realize that this is just my personal experience and covers just a fraction of what life with autism is like.  Please ask me any questions that you may have! Thanks for all your love and support as always!

 Just have to sneak a picture of baby Jonas on here too. (=

A new month, a new season, finishing the school year

At my baby shower, I remember my wonderful cousin Renee telling me that everything is a stage with kids. They will go through tough stages and will get past them. Then they will go through more tough stages and get past those. This is really helpful to remember when you're going through a tough stage. The end of April and beginning of May was rough for Mason. I have no idea why, but he was in a bad place. His teacher at school even asked if there was a change at home because he was having such a rough time at school. He would have many meltdowns...see the picture of the goose egg from hitting his head during a meltdown. 

Mason also started getting really clingy to me in the mornings before I left for work, which made a hard to leave the house. He had a bunch of major meltdowns at his OT appointments. One was so bad that we couldn't leave until 15 minutes after the appointment was over. He's getting so big that his meltdowns are hard to contain. We were getting hit a lot and he bit his OT pretty hard. It was a rough month. I felt pretty exhausted and disheartened. I felt like we took two steps back from the progress we were making. I felt like he would never talk or be able to communicate with me. I felt overwhelmed because we were trying so many ways to help him and nothing seemed to make a difference.

I knew it was a stage although it didn't make the rough days go any faster. His sleep is always all over the place. He goes to bed really well but can sometimes be up for hours before falling asleep or up for hours in the middle of the night. He doesn't ever call for us or cry, so I really have no idea when he is awake. I only notice when I wake up to feed Jonas in the middle of the night. We started him on melatonin a few weeks ago. It worked like a charm the first four nights! I think this helped Mason get out of his funk. Unfortunately, it stopped working. We are now just giving it to him around once a week although I think I need to up the dosage too.

Now the last few weeks have been awesome! Mason has been melting down less over little things. He has been talking a lot more. I've heard many random new words and a few two word phrases! It's interesting because we have said certain words to him for years, but he's never said them or tried to say them. We have no idea if he even knows certain words, but then he will just throw one out there. Today as we were driving to Meijer past the mall, he started melting down and saying, "Mall. mall." We go to the mall a lot to play there and always tell him we are going to the mall, but this is the first time he has actually said it. Last week, he went swimming in the hot tub with Uncle Jason, Bo, Helen, and daddy. He said, "Hi Jay." He's never said his uncle Jason's name before. This type of thing has been happening a lot lately, which is super exciting!

He's been just his overall happy, goofy self. It's hard not to smile when you are around him in this mood. When he gets his sleep and when he gets what his body needs sensory-wise, he is able to do so much more. He has been back to his usual self at school the last two weeks. He has been great at his last few OT appointments. Most of the appointments are with the lights off, but we go with whatever works! Mason has let the OT work on his feet and transitioning better at appointments. He's starting to try to pull the Velcro strap on his shoes, help pull his pants down, help put his socks on, climb into his car seat himself, etc. These are things he did not notice or would not help with a few months ago. He even likes to grab his shoes (and hat even though it was 80 degrees) when we are going outside. 

We are enjoying this stage he's in right now and hoping it lasts a long time. I have one more week of teaching before summer break. This summer break is filled with appointments for Mason. He will have his weekly OT appointments and may add some more intensive sessions. He will be going to summer school at his preschool for five random weeks throughout the summer. We have an intake assessment for speech therapy at the same place he goes to his OT appointments. He usually gets speech services at school, but since he won't have a lot of school this summer, we are going to add this for him. We also have an intake assessment for ABA therapy. We will see how often those appointments are. It'll be crazy busy, but hopefully we can help our Mason make some big gains.

We cannot thank our family and friends enough for their help with everything. My parents both drive Mason to school most of the days of the week. Our sister-in-law, Erin, watches our two boys at our house while we work. Patti still watches both boys one day a week. Thank you all for your help with Mason's transition to preschool this winter and spring. We are ready for the start of summer!

5 ways Mason has made me a better person

When I dreamt of being a mom, I never dreamt of my child having autism. In fact, I was scared of it. Although Mason's autism diagnosis is new, we have been through a lot in the past year trying to figure him out and how to parent him. I may not have dreamt of my child having autism, but I have definitely become a better person and a better mom because of it.

Reason #1:  I worry less about the judgement of other people and other parents.

This is probably one of the most freeing things a mom can gain. I've always struggled with caring too much with what others think of me. Zach says I'm like Rachel and he's like Phoebe in this Friends clip: https://youtu.be/6HuqNdQJSTY?t=1m50s

So many people and parents are specifically judgmental about parenting. There are even parody videos about how judgmental other moms and dads can be because of all the different parenting opinions. Many people may judge how I parent Mason when they see us in public. In fact, today in Meijer I'm sure others were judging us. I would have if I didn't know us. Mason was loud. Loud when he was happy and loud when he was mad. I absolutely love his happy sounds, but they aren't exactly normal sounding for a three and a half year old. While he hugs a Lucky Charms box, I will continue saying, "They're magically delicious," so he squeals with happiness loudly because loud, happy squeals are better than loud, angry screams. I will continue to stay calm and firmly say "no" when he hits during a tantrum because I know that yelling/spanking doesn't work with him. I will squeeze him tightly and awkwardly in the middle of the aisles because I know it helps calm him with all the sensory stimuli going on around him. I will calmly, kindly ask another person if I can go first at the deli counter because my son is insanely tantruming in the cart. Now don't get me wrong, I don't enjoy the fact that I'm sure people are looking at us like we need to get our child under control. The good thing is that I don't worry about it anymore, and that is so much more valuable to me.

Reason #2: I have more confidence in my parenting abilities than I thought I would.

I was actually worried about this issue before I had kids. I remember hearing advice at my baby shower to trust your own judgement and don't get caught up in following everyone's  parenting advice. I was never a baby person and didn't babysit, so I felt like I had no idea what I was doing as a mom. I thought I would feel overwhelmed by all the opinions of others, but I have gained confidence while parenting Mason. When you have an autistic child, you truly know him/her better than anyone. As the saying goes, "When you've met one person with autism, you've met one person with autism." While experts and therapists give so many helpful tips and teaching moments (more than I could ever dream to teach Mason), I know that I know Mason more. I can recognize his triggers before they even happen. I can help calm him better than others. This has also pushed me to have enough confidence to ask for help when I need it. Too many times we don't have the confidence to know we need others. I've also been able to be honest and vulnerable when others help us instead of feeling shamed to ask for help when my child wasn't measuring up. I definitely have many moments where I have a lot of doubt, but when the situation passes, I remember how far we have come with Mason. If we hadn't had Mason, I may have struggled to have confidence when others looked like they were parenting better because their kid was better behaved. I think all parents should be able to have this confidence in themselves even when their child may not do everything they want them to do.

Reason #3: I don't have to have everything perfect and under my control.

I like to be a perfectionist and be in control of everything. I like to solve problems and make everything better.   That makes parenting a child with autism difficult because I can't be in control of everything, and I can't fix this tough disability that Mason has to overcome. I have learned that no matter what parenting method you choose or whatever article you follow about parenting, you can't control your child. Sure, you can control your own choices about how you parent, and it may work for your kids. That doesn't mean it will work for every kid and family. I have been able to let go and accept that we are doing the absolute best we can for our sons with what we have. It's not perfect or under my control, but it's something I can be proud of doing.

Reason #4: I don't base my love or pride in my child based on his achievements.

I think love should be based on who a person is instead of what they do. So often we fear failure because we only love ourselves when we accomplish something. Unfortunately, this can get passed on to our own kids. Facebook sometimes seems like it's all about touting accomplishments. I'm guilty of it too! It's one thing to share how great your accomplishment is to your close friends, but why do we need the approval of hundreds of friends? Unfortunately so often we feel good about ourselves when others see the good things we do or our kids do. How many times do we see fb statuses or hear people say, "My child did ___ when he was only ___ months!" While I understand how exciting that may be, it's a phrase that immediately compares achievements based on what most kids don't do. What does that say about another a kid who doesn't achieve like yours? Now I don't think that we should stop talking about our kids achievements because parents should be proud of that. I'm saying that I've learned to be proud of my kid for having grit (that's for you coworkers). He has to overcome a lot of neurological miscommunications in his body just to try to speak a word or to get his motor skills working like they should. The more I learn about autism, the more I understand how difficult it must be to learn with all the distractions and sensory overload. Seeing how happy and resilient our Mason is most of the time gives me something to be proud of!

Reason #5: I have learned appreciate the little things.

It's so easy to tell our friends and family, "I love you." Three little words. I can't tell you how I long to hear this from my son. I believe that some day he will learn to speak or communicate the words, "I love you." Honestly, I sometimes feel insanely jealous when I hear other kids Mason's age talk to their parents. What I would give to hear any thought that goes through Mason's head! That being said, those feelings have pushed me to appreciate a lot of little things. Every time Mason comes to me for a hug, my heart smiles. Every time Mason looks me in the eye and gives me his fruit snack or milk, I can't help but eat it even if it's filled with slobber. I appreciate every new word that Mason says. I love hearing his voice. I appreciate every calm, happy moment because I know it can flip any second. I can't help but appreciate so many of the amazing things Mason brings to my life. I know I am a better person because I am his mom.

Mason's autism testing and diagnosis.

The big autism testing day had arrived. We arrived at Helen Devos Children's Hospital at 8am. Mason and I checked in and waited in the waiting room for around 15 minutes for the first appointment. Mason was in a good mood but was a wild man. Climbing the frog in the waiting room, rolling on the floor, trying to go in rooms, running down any hallway he could, and driving trains on any surface.

I was quite excited when they called us back, and he was contained in one room. We first met with a clinical psychologist. He observed Mason playing with toys in the room, asked me a lot of questions, and tried to play with Mason in specific ways to make observations. Mason was mostly regulated during the session and gave pretty accurate observations of his play and behaviors. I would say that the only thing he didn't show was his usual interactions with me as he was checking out everything in the room. The psychologist was really nice and knowledgeable. He answered all of my many questions as well. 

After going back to the waiting room for another insane 20 minutes of waiting with Mason, we were called back to the behavioral pediatrician. He explained that his job was to see if there would be something going on medically as well as autism. He told me that he processes a lot out loud, which was helpful to know. Mason was into every bin of toys in his room. The doctor commented on Mason's hyperactivity and impulsivity in every action. He made note of the fact that Mason had a hard time finishing his ideas because he is always distracted by another idea. This is something we have heard from other therapists. Then the doctor asked me a lot of random questions about Mason. About his head size, his hand shape, his eyes, his gait, and so much more. Mason was getting tired by this point so snuggled on my lap with his bunny and pacifier. The doctor was surprised that Mason could calm and snuggle in my lap. He also said that he considered Mason's strengths to be atypical in some ways. While Mason definitely fits the autism diagnosis, the doctor felt like there were some behaviors that are unique. Based on Mason's behaviors and physical characteristics, the doctor recommended doing some genetic testing to see if there is something else also going on with Mason.

The final appointment in the testing was with a speech pathologist. Mason was super tired by this point, so a lot of the appointment was me reporting information about Mason. He's been seeing speech therapists for over a year now, so I knew what to expect. Mason also had to hide behind a wall to poop during the appointment. The joys. (:

We just received the official report back on Friday. Even though everything in the report was expected, it still felt overwhelming to see all the information. He now has an official autism diagnosis. The psychologist wrote that he was at a moderate level. The behavioral pediatrician added that Mason has hyperkinesis of childhood with developmental delays. I had no idea what that meant, but Google tells me that it is like a more serious ADHD that's diagnosed in young children. They also noted that they were not able to assess cognitive ability at this point. The doctor did mention in the report that he would not be surprised if there was cognitive impairment. This was a hard sentence for me to see as I am still really hopeful that he does not have impairment in this area as well. Then the doctor also recommended the genetic testing like he told me during the appointment. They both recommend Mason going to ABA (applied behavioral analysis) therapy, physical therapy, occupational therapy, and speech therapy. Thankfully we have all of those in place except ABA. 

Mason's pediatrician also received the report and called to follow up. They told me they made the referral to genetics. We will get a lot of paperwork to fill out. When we send it back, they will call us to make an appointment. They will also send us a list of ABA therapists that we could go to.

So that is the big update with our sweet Mase Man. When I asked Zach to give me his opinion on this post and add anything, he told me that it was really factual and didn't have a lot of my feelings in it. The thing is...I'm having a hard time figuring out my feelings. I think getting the report kinda put me in a numb state. There are a few big, new pieces of information from the doctors that would usually bring a lot of emotions to the surface. In the past year, we have heard a lot of hard information about Mason from a lot of therapists and teachers. I think I've gotten to a place where new, difficult information has become our new norm. No information is shaking me up because I feel like I have been continually shaken up throughout the last year. I don't think it is a bad or a good thing, it's more of a coping mechanism on how to move forward and get Mason the help he needs.

So many things are going on for Mason, and he has no idea. Poor little man just goes from one appointment to the next. We are hoping that all of these diagnoses and new supports will help him grow and be the best, happiest Mason he can be.

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: