As most of you may know, I had the opportunity to guest post for the Spectrum Inspired Instagram page about a month ago. I was SO honored that they asked me and loved getting to tell a little bit more about our story. I thought I'd recap some of the posts that I did there and give a little more detail because I feel like it is a good overview of our journey.
This part might be a little repetitive, but let's pretend you know nothing about me and my family as I recap this first post I did...
First, let's start with a little background on us... our family consists of 3 people: me, (my husband) Seth, and (our son) Mason. We live in Southern California and Seth and I both work outside the home full time. Mason is 4 1/2 years old and goes to preschool full time. He was diagnosed with autism in April 2015, when he was 2 1/2, so we've been on this journey for about two years now.
When I was pregnant, everything was great. Everyday was rainbows and unicorns and I was in heaven knowing that come July 2012, I was welcoming a beautiful baby boy. Mason was born and I was instantly in love. My motherly instincts came in right away and I knew what he needed and what to do. I was in love. He was perfect.
Then, he got diagnosed with silent reflux and it was HARD. He was in so much pain and all I wanted to do was help him, but I didn't know how. I couldn't breastfeed. Things weren't going quite how I imagined. I'd read books, blogs, and magazines and the way things were going wasn't how I pictured my maternity leave going. It was harder than I thought it would be. But things got better, I eventually went back to work, and we fell into a routine. Milestones were met, milestones weren't met, but we didn't think anything was wrong. Boys are just slower, right?
Wrong. Time proved that that's not totally true. Sometimes boys aren't just slow, sometimes kids need help. And here we are. Many tests and evaluations later and we have determined that Mason has autism. I struggled with how much of our story I want to share on the internet [on Instagram and the blog] for all to read. How much is too much? BUT at the same time, finding blogs with moms with kid's with autism, moms who are honest and who share about their story have been SO helpful to me. I've found two that hit so, so close to home. I cried while reading their stories. How did they know how I feel? Are they in my head? And that's why I continue to share.
I kind of feel like it falls in to the same category as why I don't openly (voluntarily?) share that my mom passed away when I was 18. I just talk about my dad and step mom. I don't want people to "feel bad for me" or say they're sorry. I don't think of myself or my family being in a "disadvantage" (by either situation). It's life. Things happen. I don't want people to treat me any differently nor do I want people to treat Mason any differently.
That's the beauty of life. Everyone is so different and we can all learn from each other. Everyone has things they excel at and things they need a little extra help in and that's no different for us and for Mason. If you look at my Instagram profile, you'll notice that I don't often mention Mason's autism. Again, it's not because I'm embarrassed or don't want to talk about it, it's because while it may be a part of him, I don't let it define him or our family.
"Autism is a part of my child. It's not everything he is. My child is so much more than a diagnosis."
S. L. Coelho
As most of you know, Seth & I work full time. I pick Mason up from school on days he has ABA & Seth picks him up on the other days. The days the boys are together, they get home around 6pm, Seth makes dinner, we eat, & then Mason takes a bath anywhere between 7-7:30pm & then we try to get him in bed by 8pm-ish. On days he has ABA, it's even later. Ideally he'd bathe earlier & go to bed earlier but since we don't get home until late/he has ABA, it just can't happen that way.
Dinner time is fine. If Mason has the iPad or the tv is on, he's pretty distracted & we have to remind him to eat. We're trying to get better about that, but basically, he's calm. I get the bath ready, he gets in, & then it's chaos. It can be a 5 minute bath or a 30 minute bath. There can be no toys or a million toys. It doesn't matter. One time I even put a drop of lavender essential oil in the bath to see if it would help & it made no difference. He's all hyped up during & after bath time. I get him out, dry him off, take him to his room & he's bouncing all over. I put his pjs on for him or we have the following conversation until I get frustrated... "Pjs on? Yes. Or off. No, on. On or off? On. On or... Mason. Put on your pants. On or off? On. On or... Mason!" You get the idea...
He's finally dressed. We brush teeth. I fill his diffuser with a combo of cedarwood, lavender, & orange essential oils. We come downstairs for a few mins of tv to unwind. Sometimes it's cartoons, sometimes it's Wheel of Fortune 😉😂. Seth is usually on bed time duty. He & Mason go upstairs at 8pm & I don't see him again until at least 8:30, usually 9. Mason acts fine, like he'll go to bed. You say good night, get up to leave his room & he either starts whining telling you not to leave or starts crying hysterically like something horrible happened... but it didn't.
You lay there with him for a while, you think he's asleep, you come downstairs, & then all of a sudden he's running out of his room & to the stairs to sit & watch what we're doing downstairs. It's seriously frustrating & takes a good hour or so EVERY NIGHT. It wasn't always like this, it happens on and off, but it has been for the past few months or so.
SUNDAY
Our catch all days. Usually lazy days filled with grocery shopping, lots of laundry, & some sort of sporting event on tv 😂🙄 Or we try to go out & do something together as a family. We also go to my mother in law's house for family dinner night.
MONDAY
7:45am-8:30am: We stop by the post office for my work & I drop Mason off at school.
8:30am-5:30pm: school
8:30am-11:30am: ABA at school
5:30pm: Seth picks Mason up & brings him home
6pm-8pm: Seth preps dinner, we eat dinner, bath time, tv time, & bed time for Mason
TUESDAY
8am-9am: speech
9:15am-3pm: school
(soon to add) 1:30pm-2:30pm: OT
4:30pm-6:30pm: ABA therapy (sometimes at home, sometimes at clinic)
6:45pm-8pm: pick Mason up from ABA (unless a home session), eat dinner, bath time, tv time, & bed time for Mason
WEDNESDAY
8am-3pm: school
9am-11:30am: ABA at school
4:30pm-6:30pm: ABA therapy (sometimes at home, sometimes at clinic)
6:45pm-8pm: pick Mason up from ABA (unless a home session), eat dinner, bath time, tv time, & bed time for Mason
THURSDAY
8am-9am: speech
9:15am-5:30pm: school
5:30pm: Seth picks Mason up & brings him home
6pm-8pm: Seth preps dinner, we eat dinner, bath time, tv time, & bed time for Mason
FRIDAY
8am-5:30pm: school
6pm-8pm: Seth preps dinner or we go out, we eat dinner, tv time, & bed time for Mason
SATURDAY
7:30am: breakfast & bath time
9am-2pm: ABA at the clinic
2pm-bedtime: whatever we want!
The previous day I talked a little bit about our daily schedule & I mentioned Mason's ABA therapy. Now I thought I'd talk about how it works into our daily life.
Mason has been receiving ABA since Aug 2015. At that time, he was 3 yrs old. At first I didn't really know what ABA therapy was let alone how it was going to help. But let me tell you, it's made a WORLD OF DIFFERENCE. He started off with 5 sessions a week, some at home, some at school, & one at the clinic. The clinic drop off wasn't always easy. Today he barely says bye to me when I drop him off because he's so excited but Day 1 looked nothing like that. There was crying, screaming, begging for us to stay. It was like we were abandoning him. It was the SADDEST & hardest thing ever. But we worked through it & now he asks to go there. He had one therapist in the beginning & she was AMAZING. We loved her. In May 2016, she got a new job & left the company. We were devastated. Or should I say, I was devastated. Mason did so well with her. How would anyone compare?
It took a while but we finally got a new therapist to fill some sessions & slowly got a couple more to fill the rest. He now had THREE therapists & they were all... amazing! And Mason? He transitioned seamlessly to the new therapists. I was so surprised, so happy, & clearly worried for no reason. They all started off as mostly playing with him for a couple sessions & then started more in with actual ABA (since they wanted to establish a rapport with him before they started being more "strict").
We have seriously been SO LUCKY. I know not everyone is this fortunate. I am so grateful to all of his therapists for helping him learn, grow, & succeed these past few years! Sessions have gone up & back down & he now has two sessions at school, two sessions at home or clinic (they rotate based on where we need them), & one session at clinic on Saturdays. We will probably transition to less when he starts kindergarten in the fall. If I'm being honest, I hope the Saturday one is the first to go but I somehow doubt that.
We've lost five hours of family time every Saturday for the past two years and I'm desperately wanting it back. Though, also being honest, I'm not sure I'd even know what to do. We've gotten so used to our routine that it would be a big change - a big wonderful change. But, having said all that, I fully believe that early intervention is key & if we have to lose a couple more Saturdays as a family now to set him up for a lifetime of success, I'd gladly do it. And, if given the choice to do it all again... I'd make the exact same decision in a heartbeat if I had to. 💙
I also mentioned that Mason gets speech services. I thought I'd elaborate a little on that.
Mason has been getting speech therapy since about March 2014, he was 20 months old. This was about when we discovered that he was falling behind with his speech and his pediatrician recommended speech therapy. She put in a referral to our insurance and we were on our way. Around this same time, we inquired about services from our local regional center. They established that he needed speech therapy but because we had insurance, we had to use that, and they "couldn't" help us. Thankfully our insurance was amazing and referred us to a wonderful speech place. At this time, Mason had two, one on one, 30 minute speech sessions per week.
His speech therapist told us about the preschool that they had onsite and told us to look into it. It literally was in the same building and would be SO convenient for us. A lot of kids that go to the school have some sort of speech or hearing deficit and get services at the center. Around this time, we were looking to switch Mason from the daycare he was at, so it worked perfectly. Unfortunately there was a waiting list for the preschool so I added our name to the list and hoped for the best. Over the summer, we got a call that there was a spot open to start in the fall and we jumped at the opportunity. Mason was 2 when he started at the preschool.
Over the course of the next year, we bumped up his speech sessions to three, one on one, speech sessions per week. His therapist would check him out of school, do the session, and bring him back. It was perfect!
Some time in there we dropped a one on one session and added a group session. He had about 12 of those and then we asked our insurance to approve more and they came back saying it was never supposed to be approved at all. They only allow one on one sessions. Insurance. 🙄🙄 It was now May 2016, so we dropped back down to two, one on ones, a week.
Between September and November in 2016, we started the transition from private speech sessions through our insurance to free speech session with the school district. In December 2016, Mason started speech therapy through the school district. He now gets two, one hour, group sessions a week. He absolutely LOVES it and begs to go there everyday. We have been so blessed with such amazing speech therapists. We are so, SO, SO lucky. I do not take this for granted. He has learned and progressed SO much over the past few years. He talks so much now. I still remember the day he, on his own, told me "I love you." I thought my heart was going to explode right then. I had waited SO long and he had finally said it. I'm sure I cried. Happy tears of course! 😭😍
He talks so much now, so much so that you'd want to tell him to "shhh, quiet please" but I don't dare because I know how long I waited to hear his sweet voice. My boy now LOVES letters and numbers and loves to read. Reading!!! At age 4. Don't get me wrong, he can't read a whole book completely by himself, but he can read quite a few words and with help, almost a whole book. I am constantly in awe of how much he knows and the words that he can say. Words cannot accurately express how proud I am of him.
***
More on his speech journey here.
Potty training has been one of the biggest struggles for us. Mason is 4.5 years old right now and is just barely, almost 100%, potty trained. I had wanted to start earlier, but I just didn't think he was ready. He wasn't showing signs of being ready. He wasn't interested in the potty at all and he never told us when he needed to go or seemed to care if he was wet/dirty. I didn't want to push it if he wasn't ready because I didn't want to force it. And, if I'm being honest, I didn't really want to. I mean, him wearing diapers was so convenient! I didn't have to worry about asking him if he needed to go. I didn't have to worry about him needing to go on a long road trip or if we're in a 30 minute long line at Disneyland. But I think that, too, was part of the problem, it was easy for ME.
When we went in for Mason's IEP in November, I mentioned that he isn't potty trained and I was concerned. Would they let him in to kindergarten? The team asked a bunch of questions and then one of them said "oh good, it seems like it's more of the parents fault for lack of trying than an actual problem." I wanted to bawl my eyes out right then and there. Wow. Way to make me feel like a great mom. I'm sure I teared up a bit, but then I got to thinking, she's kind of right (which I hated admitting). I need to try harder.
Shortly after that, we started trying to initiate taking him more. He was relatively compliant when it was convenient for him but if we were interrupting play time, he would protest and throw a fit. We worked through it with the help of his ABA therapists and then with the help of the preschool, we said "no more diapers" and he was in underwear all day, everyday.
He's definitely had a few accidents but because we all initiate taking him pretty frequently, the accidents are rare now (it was every 20 minutes the first day and has slowly gotten longer and longer since). But that's the problem now: WE initiate taking him. He almost never tells us he needs to go. Maybe 5% of the time. I put a pull-up on him when he goes to speech since he won't tell them if he needs to go and I don't want him to have an accident but then I take it off immediately before I drop him off at school.
He also wears a pull-up to bed at night but that's all. He was scared to poop in the toilet at first but once he did (and got the train pictured above - bribery at its finest), he's been fine ever since. He won't tell us when he needs to go, but he gets this look on his face, and I rush him to the bathroom.
It's getting better and I'm so proud of how far he's come. But now I need to figure out how to get him to initiate telling us he needs to go. The few times he does tell us, he DOES go, so I know he feels it, but it needs to be all the time.
Anyone have any tips or tricks? Our ABA supervisor suggested we put up a card that says "I need to go potty" and before we take him (us initiating), we make him say the words out loud so he associates saying "I need to go potty" with going to the bathroom. But I'm open to trying anything!
***
I try to keep things happy and lighthearted here on the blog and I don't like to "bad talk" anyone, but it's not always rainbows and unicorns over here. While Mason doesn't have as many struggles as some kids do, he definitely has his fair share. For the most part, he doesn't tantrum, probably 75% (or more) of the time, but some things do set him off.
Just the other week, we were having an ABA session at home. We went outside to take a walk to the park and then when we got home, I asked Mason to go to the bathroom. For whatever reason he didn't want to and started throwing a tantrum. Usually I would just tell him to say "I don't need to go" if he doesn't need to go and we can try again later. But that's not technically what I'm supposed to have him do. I'm supposed to follow through. So since the therapist was here, we followed through and a HUGE tantrum pursued. Mason ended up going to the bathroom himself, but refused to do anything once he got there. I asked him multiple times to go potty, to pull down his pants, if he wanted to sit or stand, and nothing helped. He just kept yelling "nothing!", crying, and refusing to do anything. At this point, I'm still uncomfortable with letting him work it out himself. I'm supposed to ignore him and let him figure things out himself or move on to something else and let him finish his tantrum. For me, as his mom, it's hard for me to just let him try to work it out himself. I see him crying and I want to comfort him. But I'm not always going to be there. He needs to learn how to comfort himself. Of course if he were hurt, I wouldn't let him cry it out, but when he gets himself all worked up, I need to learn to step back and let him try to calm himself down. There are some tips that I can tell him to help himself like counting to ten or taking deep breaths, but then he needs to do those on his own.
Long story short, the tantrum went on for what felt like forever. I'm sure it was like 5 minutes, but it was a terrible 5 minutes. I tried to do it for him and pulled down his pants and underwear but then he refused to stand by the toilet and was being pretty forceful to not do what I wanted him to do. And he's strong! So we kind of just let him be for a few minutes. I talked with his therapist and we let him cry it out in the bathroom. After a couple minutes though, I couldn't take it anymore and went over to comfort him. He was having a hard time calming himself down so I hugged him tight and told him to calm down and take deep breaths and then we counted to ten. He eventually calmed down for the most part but was still doing that "can't catch my breath/stop crying" thing (if you know what I mean). We asked him what activity he wanted to do next and he said "nothing". I asked if he wanted to read, "no". Do you want to play a game? No. Do you want to play cars? No. Finally we were able to calm him down with the therapists iPad and he watched a show and was better.
Moral of the story, sometimes the littlest things set him off. We go potty ALL THE TIME and he's fine. I don't know if it was because his therapist was over and we haven't really had that many home sessions lately (I moved them to the clinic for a bit since they were doing fun activities) or if he was in a bad mood or what. Autism can be very unpredictable. You never know what's going on in their little brains, so you have to be very patient (I'm still working on this, I get frustrated sometimes still, which I think is normal) and understanding and just work with them to help calm their emotions.
With the transition to the school district for speech came our first IEP. I will admit I was nervous about what it would entail. The assessments that led up to the IEP were fine. The assessment team was wonderful, so nice, and helpful with my questions. And while the actual IEP was with the same people, it was a little intimidating for a group of 5 people to sit there telling me everything that was "wrong" with my child. I actually did agree with pretty much everything they said, nothing they said was new, but it's still hard listening to anyone say anything "negative" about your child.
With the IEP came many positives though. During his intake exam, the school nurse did a hearing test (which he passed) and a vision test which came back as "refer" (not a pass or a fail). I took him to the ophthalmologist and sure enough, he needed glasses! I'm so thankful they did that test because I honestly would have never known otherwise. The eye doctor appt actually went surprisingly well (considering they dilated his eyes) as did the glasses fitting. I was so worried because he normally hates sunglasses, hats, and anything on his head (I think it's a sensory thing, but he's getting a LOT better and now voluntarily even wears a hat sometimes!), but he was SO in to choosing his glasses and the glasses lady was SO amazing with him. (picture is Mason trying on glasses at the store.) And, I know I'm biased, but I think he looks mighty cute in his glasses. 🤓 We started them over Christmas weekend and while he took them off a few times, he did really well with them and far exceeded my expectations. In fact, to this day, he plays with them a little but 95% of the time, he's really good with them.
***
More on the IEP process here.
More on his glasses here.
I'll be honest, I never thought I'd be a parent of a child with special needs. But here we are, here I am. A parent of a child with autism. Though this is definitely not how I pictured my life, or how I thought my motherhood journey would go, I have learned so much from Mason and wouldn't change a thing. Sure it can be more challenging, more stressful, and definitely more expensive at times, but at the same time, I am learning so much just seeing life through his eyes. He is friendly, he is outgoing, he is fearless. He is a joy to be around. He lights up with joy when I ask him to help me bake cookies. He screams "YEAH!" when I ask him if he wants to go over to his best friend's house. He waves good bye to his friends at school when I pick him up, like a little celebrity, and gives a bunch of them high-fives.
Mason is going to kindergarten in the fall and as excited as I am, I am also terrified. He's more than likely going to be mainstreamed (which was the goal and is ideal but is also scary) but with speech services. Mason is the happiest and friendliest kid. He is oblivious to the bad that goes on in the world... which is good in a way but also scary for me, as a mom, because kids are mean. How will others treat him? (<-- that's the BIGGEST question for me. and the one that makes me cry the most when I think about it.) I would give ANYTHING to be there to be able to protect him. ANYTHING. But I know he will need to stand up for himself. I'm sure I've skipped way past steps 1-100 and have gone straight to 101 and don't even know if any of this will happen. Only time will tell. And I know I need to let time run it's course, but it's SO hard not to think of all the 'what ifs' and what will happen to your child. I want to protect him so bad. I want to make it ok. I want to make it good. I know it will crush me to my core if he comes home from school one day to tell me that a mean kid made fun of him. So far, the kids in his preschool class have all been amazing and so welcoming, but who knows what a whole new class and school will bring. I'm probably being overly paranoid but I can't help but being an overprotective mama bear. Parenting. All the emotions. All of the time.
I know this diagnosis doesn't define Mason. He is the same sweet, caring, loving boy that he was the day before he was diagnosed. We don't treat him any differently (as we should). On the day he was diagnosed, we were given a piece to the 'Mason puzzle' and a tool to help us help him. I know this isn't a death sentence. He is not sick. But, I'm only human and I'll be brutally honest, I can't help but think "why me?" "why us?" "why Mason?". I'm sure someone somewhere thought we could handle this and I know we can, and we have, but I still wonder, why. I think that is a normal question to ask. I mean it can be applicable for anything. It is common for people to wonder why. Nobody wants anything to be wrong with their child, no matter how big or small. Nobody wants to be told, by a doctor, that their kid will need extra help.
Speaking of... sometimes, I feel alone. Well, maybe not alone, but like nobody fully understands me. I feel like SAHM's don't understand me because they don't work outside the home full time like I do. I feel like working moms don't understand me because I'm constantly trying to juggle doctor appts and therapies all while being a good employee. Thankfully my job is so flexible and understanding. I don't know what I'd do if it wasn't.
Speaking of therapies... sometimes I feel guilt over the fact that he needs therapists and specialists to help him with things I feel like I should have been able to do.
Most people can tell their kids to "smile for a picture!" but pictures aren't that easy for me. Pictures are hard, he's almost never looking because it's easier to take them when he's distracted.
I feel like this post has been all over the place and for that I apologize. While having a child with special needs can definitely have its challenges, it can be ever so rewarding as well. The first time Mason said "I love you", my heart burst in to a million pieces. When he puts together a sentence with six words or asks me a question, I am so proud. When he makes good eye contact without me asking for "eyes", I am so proud. It really is the little things that matter the most. I love this boy with my full heart and would not change one single thing about him. 💙
***
Hope these "mini posts" (aka which turned in to the world's longest post ever) gave you all a little insight on us. Can't wait to share more!
The day I posted this, I felt like I'd been running around like a chicken with my head cut off, so I thought it would be a good day to do a little "week in the life of Mason" type of post.
I just shared an actual "week in the life of us" post last week -- if you missed the post, you can find it here and if you want the cliff notes version, see below.
I just shared an actual "week in the life of us" post last week -- if you missed the post, you can find it here and if you want the cliff notes version, see below.
SUNDAY
Our catch all days. Usually lazy days filled with grocery shopping, lots of laundry, & some sort of sporting event on tv 😂🙄 Or we try to go out & do something together as a family. We also go to my mother in law's house for family dinner night.
MONDAY
7:45am-8:30am: We stop by the post office for my work & I drop Mason off at school.
8:30am-5:30pm: school
8:30am-11:30am: ABA at school
5:30pm: Seth picks Mason up & brings him home
6pm-8pm: Seth preps dinner, we eat dinner, bath time, tv time, & bed time for Mason
TUESDAY
8am-9am: speech
9:15am-3pm: school
(soon to add) 1:30pm-2:30pm: OT
4:30pm-6:30pm: ABA therapy (sometimes at home, sometimes at clinic)
6:45pm-8pm: pick Mason up from ABA (unless a home session), eat dinner, bath time, tv time, & bed time for Mason
WEDNESDAY
8am-3pm: school
9am-11:30am: ABA at school
4:30pm-6:30pm: ABA therapy (sometimes at home, sometimes at clinic)
6:45pm-8pm: pick Mason up from ABA (unless a home session), eat dinner, bath time, tv time, & bed time for Mason
THURSDAY
8am-9am: speech
9:15am-5:30pm: school
5:30pm: Seth picks Mason up & brings him home
6pm-8pm: Seth preps dinner, we eat dinner, bath time, tv time, & bed time for Mason
FRIDAY
8am-5:30pm: school
6pm-8pm: Seth preps dinner or we go out, we eat dinner, tv time, & bed time for Mason
SATURDAY
7:30am: breakfast & bath time
9am-2pm: ABA at the clinic
2pm-bedtime: whatever we want!
Mason has been receiving ABA since Aug 2015. At that time, he was 3 yrs old. At first I didn't really know what ABA therapy was let alone how it was going to help. But let me tell you, it's made a WORLD OF DIFFERENCE. He started off with 5 sessions a week, some at home, some at school, & one at the clinic. The clinic drop off wasn't always easy. Today he barely says bye to me when I drop him off because he's so excited but Day 1 looked nothing like that. There was crying, screaming, begging for us to stay. It was like we were abandoning him. It was the SADDEST & hardest thing ever. But we worked through it & now he asks to go there. He had one therapist in the beginning & she was AMAZING. We loved her. In May 2016, she got a new job & left the company. We were devastated. Or should I say, I was devastated. Mason did so well with her. How would anyone compare?
It took a while but we finally got a new therapist to fill some sessions & slowly got a couple more to fill the rest. He now had THREE therapists & they were all... amazing! And Mason? He transitioned seamlessly to the new therapists. I was so surprised, so happy, & clearly worried for no reason. They all started off as mostly playing with him for a couple sessions & then started more in with actual ABA (since they wanted to establish a rapport with him before they started being more "strict").
We have seriously been SO LUCKY. I know not everyone is this fortunate. I am so grateful to all of his therapists for helping him learn, grow, & succeed these past few years! Sessions have gone up & back down & he now has two sessions at school, two sessions at home or clinic (they rotate based on where we need them), & one session at clinic on Saturdays. We will probably transition to less when he starts kindergarten in the fall. If I'm being honest, I hope the Saturday one is the first to go but I somehow doubt that.
We've lost five hours of family time every Saturday for the past two years and I'm desperately wanting it back. Though, also being honest, I'm not sure I'd even know what to do. We've gotten so used to our routine that it would be a big change - a big wonderful change. But, having said all that, I fully believe that early intervention is key & if we have to lose a couple more Saturdays as a family now to set him up for a lifetime of success, I'd gladly do it. And, if given the choice to do it all again... I'd make the exact same decision in a heartbeat if I had to. 💙
Mason has been getting speech therapy since about March 2014, he was 20 months old. This was about when we discovered that he was falling behind with his speech and his pediatrician recommended speech therapy. She put in a referral to our insurance and we were on our way. Around this same time, we inquired about services from our local regional center. They established that he needed speech therapy but because we had insurance, we had to use that, and they "couldn't" help us. Thankfully our insurance was amazing and referred us to a wonderful speech place. At this time, Mason had two, one on one, 30 minute speech sessions per week.
His speech therapist told us about the preschool that they had onsite and told us to look into it. It literally was in the same building and would be SO convenient for us. A lot of kids that go to the school have some sort of speech or hearing deficit and get services at the center. Around this time, we were looking to switch Mason from the daycare he was at, so it worked perfectly. Unfortunately there was a waiting list for the preschool so I added our name to the list and hoped for the best. Over the summer, we got a call that there was a spot open to start in the fall and we jumped at the opportunity. Mason was 2 when he started at the preschool.
Over the course of the next year, we bumped up his speech sessions to three, one on one, speech sessions per week. His therapist would check him out of school, do the session, and bring him back. It was perfect!
Some time in there we dropped a one on one session and added a group session. He had about 12 of those and then we asked our insurance to approve more and they came back saying it was never supposed to be approved at all. They only allow one on one sessions. Insurance. 🙄🙄 It was now May 2016, so we dropped back down to two, one on ones, a week.
Between September and November in 2016, we started the transition from private speech sessions through our insurance to free speech session with the school district. In December 2016, Mason started speech therapy through the school district. He now gets two, one hour, group sessions a week. He absolutely LOVES it and begs to go there everyday. We have been so blessed with such amazing speech therapists. We are so, SO, SO lucky. I do not take this for granted. He has learned and progressed SO much over the past few years. He talks so much now. I still remember the day he, on his own, told me "I love you." I thought my heart was going to explode right then. I had waited SO long and he had finally said it. I'm sure I cried. Happy tears of course! 😭😍
He talks so much now, so much so that you'd want to tell him to "shhh, quiet please" but I don't dare because I know how long I waited to hear his sweet voice. My boy now LOVES letters and numbers and loves to read. Reading!!! At age 4. Don't get me wrong, he can't read a whole book completely by himself, but he can read quite a few words and with help, almost a whole book. I am constantly in awe of how much he knows and the words that he can say. Words cannot accurately express how proud I am of him.
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More on his speech journey here.
When we went in for Mason's IEP in November, I mentioned that he isn't potty trained and I was concerned. Would they let him in to kindergarten? The team asked a bunch of questions and then one of them said "oh good, it seems like it's more of the parents fault for lack of trying than an actual problem." I wanted to bawl my eyes out right then and there. Wow. Way to make me feel like a great mom. I'm sure I teared up a bit, but then I got to thinking, she's kind of right (which I hated admitting). I need to try harder.
Shortly after that, we started trying to initiate taking him more. He was relatively compliant when it was convenient for him but if we were interrupting play time, he would protest and throw a fit. We worked through it with the help of his ABA therapists and then with the help of the preschool, we said "no more diapers" and he was in underwear all day, everyday.
He's definitely had a few accidents but because we all initiate taking him pretty frequently, the accidents are rare now (it was every 20 minutes the first day and has slowly gotten longer and longer since). But that's the problem now: WE initiate taking him. He almost never tells us he needs to go. Maybe 5% of the time. I put a pull-up on him when he goes to speech since he won't tell them if he needs to go and I don't want him to have an accident but then I take it off immediately before I drop him off at school.
He also wears a pull-up to bed at night but that's all. He was scared to poop in the toilet at first but once he did (and got the train pictured above - bribery at its finest), he's been fine ever since. He won't tell us when he needs to go, but he gets this look on his face, and I rush him to the bathroom.
It's getting better and I'm so proud of how far he's come. But now I need to figure out how to get him to initiate telling us he needs to go. The few times he does tell us, he DOES go, so I know he feels it, but it needs to be all the time.
Anyone have any tips or tricks? Our ABA supervisor suggested we put up a card that says "I need to go potty" and before we take him (us initiating), we make him say the words out loud so he associates saying "I need to go potty" with going to the bathroom. But I'm open to trying anything!
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I try to keep things happy and lighthearted here on the blog and I don't like to "bad talk" anyone, but it's not always rainbows and unicorns over here. While Mason doesn't have as many struggles as some kids do, he definitely has his fair share. For the most part, he doesn't tantrum, probably 75% (or more) of the time, but some things do set him off.
Just the other week, we were having an ABA session at home. We went outside to take a walk to the park and then when we got home, I asked Mason to go to the bathroom. For whatever reason he didn't want to and started throwing a tantrum. Usually I would just tell him to say "I don't need to go" if he doesn't need to go and we can try again later. But that's not technically what I'm supposed to have him do. I'm supposed to follow through. So since the therapist was here, we followed through and a HUGE tantrum pursued. Mason ended up going to the bathroom himself, but refused to do anything once he got there. I asked him multiple times to go potty, to pull down his pants, if he wanted to sit or stand, and nothing helped. He just kept yelling "nothing!", crying, and refusing to do anything. At this point, I'm still uncomfortable with letting him work it out himself. I'm supposed to ignore him and let him figure things out himself or move on to something else and let him finish his tantrum. For me, as his mom, it's hard for me to just let him try to work it out himself. I see him crying and I want to comfort him. But I'm not always going to be there. He needs to learn how to comfort himself. Of course if he were hurt, I wouldn't let him cry it out, but when he gets himself all worked up, I need to learn to step back and let him try to calm himself down. There are some tips that I can tell him to help himself like counting to ten or taking deep breaths, but then he needs to do those on his own.
Long story short, the tantrum went on for what felt like forever. I'm sure it was like 5 minutes, but it was a terrible 5 minutes. I tried to do it for him and pulled down his pants and underwear but then he refused to stand by the toilet and was being pretty forceful to not do what I wanted him to do. And he's strong! So we kind of just let him be for a few minutes. I talked with his therapist and we let him cry it out in the bathroom. After a couple minutes though, I couldn't take it anymore and went over to comfort him. He was having a hard time calming himself down so I hugged him tight and told him to calm down and take deep breaths and then we counted to ten. He eventually calmed down for the most part but was still doing that "can't catch my breath/stop crying" thing (if you know what I mean). We asked him what activity he wanted to do next and he said "nothing". I asked if he wanted to read, "no". Do you want to play a game? No. Do you want to play cars? No. Finally we were able to calm him down with the therapists iPad and he watched a show and was better.
Moral of the story, sometimes the littlest things set him off. We go potty ALL THE TIME and he's fine. I don't know if it was because his therapist was over and we haven't really had that many home sessions lately (I moved them to the clinic for a bit since they were doing fun activities) or if he was in a bad mood or what. Autism can be very unpredictable. You never know what's going on in their little brains, so you have to be very patient (I'm still working on this, I get frustrated sometimes still, which I think is normal) and understanding and just work with them to help calm their emotions.
With the IEP came many positives though. During his intake exam, the school nurse did a hearing test (which he passed) and a vision test which came back as "refer" (not a pass or a fail). I took him to the ophthalmologist and sure enough, he needed glasses! I'm so thankful they did that test because I honestly would have never known otherwise. The eye doctor appt actually went surprisingly well (considering they dilated his eyes) as did the glasses fitting. I was so worried because he normally hates sunglasses, hats, and anything on his head (I think it's a sensory thing, but he's getting a LOT better and now voluntarily even wears a hat sometimes!), but he was SO in to choosing his glasses and the glasses lady was SO amazing with him. (picture is Mason trying on glasses at the store.) And, I know I'm biased, but I think he looks mighty cute in his glasses. 🤓 We started them over Christmas weekend and while he took them off a few times, he did really well with them and far exceeded my expectations. In fact, to this day, he plays with them a little but 95% of the time, he's really good with them.
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More on the IEP process here.
More on his glasses here.
I'll be honest, I never thought I'd be a parent of a child with special needs. But here we are, here I am. A parent of a child with autism. Though this is definitely not how I pictured my life, or how I thought my motherhood journey would go, I have learned so much from Mason and wouldn't change a thing. Sure it can be more challenging, more stressful, and definitely more expensive at times, but at the same time, I am learning so much just seeing life through his eyes. He is friendly, he is outgoing, he is fearless. He is a joy to be around. He lights up with joy when I ask him to help me bake cookies. He screams "YEAH!" when I ask him if he wants to go over to his best friend's house. He waves good bye to his friends at school when I pick him up, like a little celebrity, and gives a bunch of them high-fives.
Mason is going to kindergarten in the fall and as excited as I am, I am also terrified. He's more than likely going to be mainstreamed (which was the goal and is ideal but is also scary) but with speech services. Mason is the happiest and friendliest kid. He is oblivious to the bad that goes on in the world... which is good in a way but also scary for me, as a mom, because kids are mean. How will others treat him? (<-- that's the BIGGEST question for me. and the one that makes me cry the most when I think about it.) I would give ANYTHING to be there to be able to protect him. ANYTHING. But I know he will need to stand up for himself. I'm sure I've skipped way past steps 1-100 and have gone straight to 101 and don't even know if any of this will happen. Only time will tell. And I know I need to let time run it's course, but it's SO hard not to think of all the 'what ifs' and what will happen to your child. I want to protect him so bad. I want to make it ok. I want to make it good. I know it will crush me to my core if he comes home from school one day to tell me that a mean kid made fun of him. So far, the kids in his preschool class have all been amazing and so welcoming, but who knows what a whole new class and school will bring. I'm probably being overly paranoid but I can't help but being an overprotective mama bear. Parenting. All the emotions. All of the time.
I know this diagnosis doesn't define Mason. He is the same sweet, caring, loving boy that he was the day before he was diagnosed. We don't treat him any differently (as we should). On the day he was diagnosed, we were given a piece to the 'Mason puzzle' and a tool to help us help him. I know this isn't a death sentence. He is not sick. But, I'm only human and I'll be brutally honest, I can't help but think "why me?" "why us?" "why Mason?". I'm sure someone somewhere thought we could handle this and I know we can, and we have, but I still wonder, why. I think that is a normal question to ask. I mean it can be applicable for anything. It is common for people to wonder why. Nobody wants anything to be wrong with their child, no matter how big or small. Nobody wants to be told, by a doctor, that their kid will need extra help.
Speaking of... sometimes, I feel alone. Well, maybe not alone, but like nobody fully understands me. I feel like SAHM's don't understand me because they don't work outside the home full time like I do. I feel like working moms don't understand me because I'm constantly trying to juggle doctor appts and therapies all while being a good employee. Thankfully my job is so flexible and understanding. I don't know what I'd do if it wasn't.
Speaking of therapies... sometimes I feel guilt over the fact that he needs therapists and specialists to help him with things I feel like I should have been able to do.
Most people can tell their kids to "smile for a picture!" but pictures aren't that easy for me. Pictures are hard, he's almost never looking because it's easier to take them when he's distracted.
I feel like this post has been all over the place and for that I apologize. While having a child with special needs can definitely have its challenges, it can be ever so rewarding as well. The first time Mason said "I love you", my heart burst in to a million pieces. When he puts together a sentence with six words or asks me a question, I am so proud. When he makes good eye contact without me asking for "eyes", I am so proud. It really is the little things that matter the most. I love this boy with my full heart and would not change one single thing about him. 💙
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Hope these "mini posts" (aka which turned in to the world's longest post ever) gave you all a little insight on us. Can't wait to share more!
Thank you so much for writing this Liz. It was so informative, but also spoke from your heart. I feel like I've learned so much about your life and Mason's everyday. Since my nephew has autism I have an idea, but this was so detailed. I loved reading it. It gave me a glimpse into your everyday. I know I've said this before, but Mason is so lucky that you were chosen as him Mommy. You haven't let his diagnosis bring you down or change you, which is huge. Putting Mason first is how it should be, but as a teacher I can tell you that it doens't happen that way a lot of the time. You are amazing!! I am so glad you shared this.
ReplyDeleteThis all sounds so difficult. I especially relate to where the woman in the meeting claimed that Mason not being potty trained was parent error. And then the story about his tantrum. Zachary is almost 10 and still has tantrums, and I know it's my fault. I do things to avoid him getting upset and I give in to him too often because I don't know how else to cope with the tantrums! It is hard, and he does not have autism! I think you have a lot of strength as a mom and I really liked reading more about you and Mason again here.
ReplyDeleteOh sweet boy! I just adore that Mason of yours. And yes, bedtime is crazy town around here too. My Mason has a hard time winding down and takes forrrrrrrever to fall asleep. This post is so informative and I loved getting to peek inside of your days. I know this will be helpful to others as well!
ReplyDeleteI always love reading about Mason! He's such a little cutie & I can relate on several levels. My son does speech, he is Mason's age, TANTRUMS! I have worried myself to death about mine going to Kindergarten this year and figured out since Chase will turn 5 in July (kindergarten age) he will still be eligible for Pre-K for another year since he has an IEP.So that is the route we are going to give him one more year to grow (emotionally for sure) But who knows what the right answer is, making all these decisions is hard work! You are doing a great job with him!
ReplyDeleteI finally got a chance to sit down and read this. I love how much he enjoys school and his therapists. It's so hard seeing them upset so having those transitions be easier on them is amazing. As far as potty training goes, Kase still doesn't really tell us he needs to go either. I'd say he's told us a total of 10 times. We just take him when it's been a certain amount of time. He tells them more at therapy, but I think it's because he's got someone there with him one on one and really interacting and keeping on top of things. It's hard to do all that at home with other kids. But our therapists aren't worried about it at all. They said there are many kids not on the spectrum that still need to be told to go to the bathroom. They work on it a little bit at therapy, but they said it's something that will just come on its own. I get frustrated with that sometimes and feel like I should be doing more, but I am trusting that they know what they're talking about.
ReplyDeleteYou are an awesome mom! Thanks for sharing! Hope you guys are having a good week!
You are amazing, Liz!! I hope I tell you more often than not how much I admire you and not because of your life circumstances but because of your amazing attitude. I will never fully know your day to day but you make it look easy and natural. And never have I identified Mason as his diagnosis and thats because of your brilliant advocacy.
ReplyDeleteAnd I totally speak on my girl's behalves and I could care less if someone thinks its weird lol. Thankfully my kids have a healthy sense of stranger danger ;)
Liz. If I've said it once, I've said it a million times. But, I'm going to say it again... You are such an amazing mom. I am constantly in awe of you.
ReplyDeleteThe way you've handle every curve ball that's been thrown is flawless. You make parenting look easy - and you're juggling so much more than most! The number of classes/therapies you have to keep track of in a week? Meanwhile, I have like three things (total) a week, and I'm like, "HELP! SOS!"
Mason is the sweetest little man. I just know he will transition flawlessly into Kindergarten.
You're pretty awesome. And you're doing a kick as job at this whole Mom thing. Mason is so incredibly lucky to have you and Seth as his parents.
xo
I just want to say, you're amazing and Mason is so lucky to have you. You are doing a great job and you just keep repeating that to yourself every day! I will also say that while I know Mason has autism, I also know that he is 4. Ethan bounces off the wall, doesn't want to go to bed, etc, etc. I think some of that is just being 4...so remind yourself of that too! ;) I love that you are open to sharing his story and the journey that you're on. My niece is autistic as well and progressed so much thanks to her therapies, school and help. It really does take a village, and there is no shame in that! You are doing the absolutely best job and like I said above, Mason is soo soo lucky to have you as his mama! Sending hugs! XO
ReplyDeleteMason is just thriving! And he totally looks like you're typical four year old so I can see how it would be hard to sometimes deal with strangers and not want to explain everything. Although Liam still doesn't like to talk to cashiers, etc. so there's that! As always, younare doing such an awesome job with him Liz!
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