[Autism] Potty Training Struggles.

Thursday, June 16, 2016

This post is about to get real. And personal. And I guess now would probably be a good time to tell you that I cried while writing it. #fairwarning . Sometimes I feel like I tell the internet too much, but other times I feel like if I can help even one person, then my sharing is more than worthwhile. So, here goes.

Yesterday, Mason had his home ABA session. This is nothing new for him or for me, but I think this was the first session that I was home for with the new BI (behavior interventionist aka ABA therapist). The first one, I had an appointment, so Seth was home. The second one, I had a work dinner, so Seth was home. The third one, Mason had a hearing test, so we cancelled it. And yesterday was the fourth one, and I was FINALLY home for it. I had met the BI before so it wasn't our first meeting, it was just my first time home with her during a home ABA session.

Everything started off great. I got to ask some questions that I had and she and Mason were playing. Then she told me that she had a question for me. She wanted to know if I would be ok with us taking Mason's diaper (pull up) off for the session to help with potty training. I said that would be fine. So, I took Mason to the bathroom to go potty. She told me I needed to work on letting him do as much as possible (out of instinct, I usually help him pull down his pants, etc.) so I instructed him to pull down his pants and he did. I asked him to pull down his underwear and he did. And then I asked him to pull down his pull up and he did. I asked him to lift the toilet seat (he did) and told him to go potty (he did). She was amazed how well he did for me since he protested SO much at school on Saturday for her. She asked if it is always this easy and I said sometimes yes and sometimes no. Instead of pulling his pull up back up, I took it off and threw it away and then asked him to pull up his underwear and his pants. He did both, but I think he was a little confused on the feeling of just the underwear and no pull up. I explained that it's ok and I helped him button and zip up his pants.

Everything was fine and we kept playing.

Shortly thereafter we decided to try again. It was his first time with no pull up and just underwear so we were going to have him try to go potty every 15 minutes to make sure he didn't have an accident. This is when things went downhill.

I started to bring him to the bathroom and he started yelling no. I explained that we were just going to try to go potty and he kept yelling no. By now I had walked with him into the bathroom and asked him to pull down his pants. He started crying and yelling no no no. The BI told me to hold strong. I asked over and over if he would pull down his pants and he just continued to cry and scream. I held strong. She told me to ignore him. I tried. I asked over and over for him to pull down his pants and finally, since he wasn't, I helped him do it. It wasn't easy and he was crying and screaming and fighting me the whole time. We finally got his pants down. I asked him to go potty and he screamed no and cried more. Tantrum, freaking out, crying. I just sat there and listened.

I asked him if he was all done. He said no. I continued to let him cry. He was crying, screaming, flailing his arms, tears streaming down his face, snot coming out of his nose, so upset and crying. I had to stand my ground, and I let him cry. I asked again if he was all done. He said no. I waited. I asked again if he was all done. He said no. I wiped his tears and his nose and I waited. By this point, Seth had come home and was wondering what the heck was going on. Mason saw him and cried for Daddy. We told him not to say anything and he went and sat down on the couch, out of Mason's sight. He cried a little more for Daddy and then stopped. I asked him if he was all done. He said no. I waited. I asked again and he finally said he was all done. By now it had been maybe 10 minutes, I'm not totally sure since I didn't have a clock nearby. I said thank you for telling me that he was all done and I asked him to help me pull up his pants. He fought it a bit, but then through the crying, he helped me. He was fully dressed and I told him he could come out of the bathroom and go play whatever he wanted. The BI and I walked back to the couch to sit down and Mason came out of the bathroom but continued crying. He was extremely emotional and upset. He sat on the ground on his knees and put his face towards the ground and just cried and cried and cried. She told me to leave him alone, that he needed to work it out himself. He screamed, he cried, his sniffled for a good maybe 5 more minutes until he finally calmed himself down enough to come over to us. I asked him if he was ok and he whimpered yeah and I gave him the iPad to have some time to fully wind down. He sat in his chair and watched the iPad for a few minutes.

A little while later, I asked him if he wanted to play a game instead of watch the iPad and the whole thing started all over again. The crying. The screaming. The horrible tantrum. This time he was in the living room but it was just as bad. He slammed a drawer. He banged on the cabinet. He flung his arms around and screamed and cried. We left him alone. We told him when he was ready, he could say all done, and Daddy would give him a snack (he mentioned he wanted one earlier). He cried. I asked him if he was all done and he said no. The crying continued. At this point I prayed that my neighbors couldn't hear all of this going on because if they could, they would probably think something terrible was going on.

Throughout the whole thing, even though I felt terrible that I had to let him cry so much and just let the tantrum play out, I knew he was safe. Even though he was super worked up, he wasn't hurting himself and I knew he was safe and if things got out of hand, I would step in.

He got himself so worked up that he was sweating. He was crying and sweating and flinging his arms and was so mad. He eventually ended up walking to the bathroom where I eventually walked over to ask him if he was all done. He said no. I put down the iPad and told him that when he was all done, he could have the iPad. He continued to cry for a few more minutes, trying to calm himself down, which he eventually did, all on his own. He finally decided he was ok enough to pick up the iPad and walk over to the couch and sit down and watch it. His second tantrum was over.

The whole experience was terrible. It was HORRIBLE. It was possibly the hardest thing I've ever done as a mom. I think it was so hard 1) obviously because I could tell something was wrong and upsetting my child and there wasn't anything I was supposed to do about it besides let it run it's course and 2) I usually give in before it escalates to this. If we try to go to the bathroom and he says no and gets upset, I just say ok and pull up his pants and give in. What the BI was trying to teach me was that you can't always give in, you need to stand your ground and you need to hold strong. It's not always easy, but it's how kids with autism learn. It might be how other kids learn too, from knowing that the parent is serious, but in my experience, this is all I know. Earlier in the afternoon I had asked her about telling Mason to do something and how to best tell/ask him and she said the fewer the words and the more direct is best. For example, I would normally say "can you please throw this away, Mason?" and what I should say is "trash". They learn best with fewer words so it's not too confusing as well as direct and straight to the point. While the other way might be more polite, we need to start off short and sweet and then work our way to adding polite words in. The trash example might not be the best since he actually understands the whole phrase for that but the same works for cleaning up -- "put away" vs "can you please put these puzzle pieces away?". To others I may sound rude speaking to my child, but to my child, it is how he learns and understands - one word commands at a time.

I love this little boy something fierce and watching him cry and be SO upset was heartbreaking. HEARTBREAKING. It's so hard for me to write this and explain it because I feel like most people don't understand. Heck, I almost don't understand. My motherly instinct was to jump in and protect my baby. He was crying and needed comforting, but I just had to sit there and listen... to the worst noise in the world.

I knew there was something I could do, but I knew I shouldn't, to help him learn. As terrible and horrible as it is to say that, I had to let him cry and tantrum for his own good. For kids with autism, it's how they learn. He needed to work his frustrations out on his own and calm himself down. And he did. He was able to do that all on his own.

As much as I hate to say it, this was just day one of many of this happening. We're going to work on him just wearing underwear about one hour a day and see if he understands more about acknowledging when he needs to use the potty. I'm sure he will protest and he will cry when we suggest him going to the potty, but he needs to know that all he needs to do is say "all done" and he can be done. We're trying to teach him to use his words (I say this often since I know he can do this to express himself now) and to tell us what he needs. I am not going to force him to do anything he doesn't need to do (for example, if he doesn't need to go potty, you can't force that), but he needs to tell me that he's all done so I know he's done. I feel like it's probably going to get worse before it gets better. I know I need to be strong. I need to be strong to teach my son. It's better that we do this now, in the privacy of our own home, rather than him being in kindergarten and possibly dealing with it in front of peers. His BI looked at me and asked if I was ok, asked if I thought that I could handle this, as I'm sure she could see the tears welling up in my eyes as I listened to my son crying and I sat there helpless. She assured me that she's done this multiple times and that he will be ok, that I will be ok, and I believe her. There's still so much I need to learn about kids with autism, specifically my son with autism, and I am learning so much everyday. I need to be strong for him. I can be strong for him.

While potty training might have some easy to some moms and kids, it hasn't been that way for us. And that's ok. Every child is different. I'd be lying if I said I wasn't jealous that it came so easy for others. Do I wish that happened for us? Sure. Wouldn't we all? Maybe we should have started earlier? Maybe we should have pushed him harder? What if, what if, what if. One can't say. The past is the past. But I do know this. He is worth fighting for and I'll do whatever he needs.

I don't really know how to explain it, but I think that what was so hard about this experience was that I didn't think Mason was like that... in the fact that I've never seen him tantrum like that before. People always ask if he tantrums and I say no. I considered myself lucky. I think I might have just had rose colored glasses on or something and while I don't think he is a perfect angel, I didn't think of him as tantruming. I don't want to label him, but for the sake of explaining myself, I always thought of him as high functioning. But maybe, I'm just catering to all his needs, babying him, and doing whatever he wants and giving him whatever he needs so he doesn't need to tantrum? The most I ever really do to cause a tantrum is to take the iPad away in the morning so we can go to work/school and even then, it's short lived because I give him his milk and he's back to his happy self.

On the occasion that he does tantrum, I give in pretty easily, so it just seems like he's crying for a few seconds and then it's over. Nobody wants to see their child upset. I don't want to say that I live in denial, because I am fully aware and accepting of his diagnosis, but I do firmly believe that the diagnosis does not define him. Yes, it is a part of who he is, but it's just one piece of the Mason puzzle.

Regardless of what happened in the past or whatever colored glasses I think I'm wearing, this whole potty training journey is going to be a learning and growing lesson for us all.

***

And now I am sitting here, writing this post, and all I can think about is crawling into bed with him and cuddling him and telling him how much I love him. In fact, as we were on our way upstairs to go to bed, I just sat down with him, looking in his eyes, and him looking in to mine. I started to cry and I knew he was confused but just looked at me with so much love.

Love. Caring. Compassion.

These are all emotions that most children with autism don't feel. I am so lucky to be able to experience it with Mason. Lucky. Blessed to be his mama. 

I tucked him into bed and said "I love you so much, Mason."

And he said "I luh you Mommy. Guh-Night!"

And right then my heart burst into a million pieces and I knew... I must be doing something right.






21 comments:

  1. I just want to give you both hugs! You did so well Mama!!! I'm the same with with my Mason. I hate to see him upset and avoid/ stop his tantrums asap. I'm not really a "tough love" type of person but sometimes it is necessary.

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  2. I honestly don't even know what to say. I'm so sorry. I can't imagine just having to watch him scream. I'm glad the therapist asked how you were. I'm sure it's so hard having to do what someone else is telling you (even though I know she knows best). I really pray that the hours get easier and he figures it out very quickly (for both your sake). Sending lots of hugs!!

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  3. When Aria cries my body heats up. It's happened since she was a baby. My heart races and I got super hot. Her cries just trigger that response I guess. You hear your baby cry and your body is like...let's do this. So to have to step back and not do this, it is like going against your nature and instincts as a parent. And ugh when they tantrum it is so much easier to appease or distract to make it stop. It is such a pain that sometimes the better way to handle it is just oh so hard. I'm sorry potty training has been harder for Mason and that you have to listen to him work it out on his own. It's definitely a hard mama moment, but it sounds like you did great even with tears welling. Sometimes those help too =)

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  4. Potty training was the hardest thing I've had to do as a mom and my kids don't have autism, so I can't imagine how hard it must be for you.

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  5. Liz, you are an amazing mom and Mason is so lucky to have you.

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  6. Hugs, mama! You are doing an amazing job with Mason and I'm always so impressed by your strength and positive outlook. You're right, you are doing EVERYTHING right and you should never, ever second guess that. Being a mama is hard period and I admire you so much for dealing with this piece to Mason's puzzle. He is one lucky (and awesome) little guy!

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  7. You are an amazing mom! Mason is so lucky to have you <3

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  8. Always remember that Mason is so, so lucky to have YOU for his Mama. You are doing all of this, all of the hard stuff FOR Mason. Because of you {and Seth} he is excelling, learning, growing & thriving. Sending you the biggest hug!

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  9. You are most definitely doing everything right sweet friend. You are such an amazing mommy to Mason and I just admire you! You are always so positive and have awesome strength!! While I know nothing about parenting a child with autism, I do know that being consistent is so very important and has helped us. Being a mama is hard, but once you take a look at that sweet little guy you know that it's all worth it. The hard, the tears, the messy, all of it - worth it! Mason is so lucky to have someone that loves him so much! Big hugs, friend!

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  10. You are doing SO MUCH right!! I guess I want to relate in the fact that it's hard to watch your kid struggle and it's hard to stand back and let them struggle; but you are SO right, it's a learning experience for everyone and good can/will come from it!! I am thankful you have such strong support (Seth, therapists..) with you to help you in this journey. Thank you for sharing it with us. :) I hope in a little-tiny way, I can offer support and encouragement too cause parenting is tough. You're doing an awesome job!! xo :)

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  11. You are a wonderful mom! I do understand where you are coming from. All of Liam's "typical" buddies are almost done with potty training and he still doesn't grasp the concept. Plus, we're not sure how long it will take him to develop bladder control. It's definitely hard not to feel a bit jealous at times. I try to remind myself that he will get there in his own time frame and when he does it will feel amazing! Hang in there, mama! I appreciate you being so honest about the struggles!

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  12. Oh Liz- you are doing so many things right. You are doing everything right for mason. I know this must have been terrible to witness and then write out and live all over again. But what a sweet good night ending.

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  13. Oh, friend. You are an amazing mama! Thank you for being brave and sharing this with us. Mason is so lucky to have you!

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  14. I think you are an incredible mom, friend and all around awesome person. I know sharing such personal things is scary and raw but for me I learn so much more about myself once I let that guard down. I dont know much about Autism but you sharing about it is beautiful and gives such a loving potrait of your relationship with Mason.

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  15. All kids have struggles. They are learning daily and it's not easy. The behavior you detailed is us when using the restroom in public. Connor will be potty trained a year this July and while we are accident free and he tells me when he needs to go, going in public was Hell on Earth. I had to force him to go into the restroom then the stall then sit on the toilet. Like your BI said you have to be strong and not give in. It's easier said than done but finally, 11 months later we've mastered public restrooms (for the most part).

    I will admit to you that we have a horrible bedtime habit of laying down with C until he falls asleep. He doesn't like going to bed alone. I know we should push this independence but the tears and fits and drama right before bed isn't good for anyone so we give in. Maybe one day we will have an easy bedtime but until then, I'm going to do what's best for my guy.

    As hard as this situation is, you and Mason (Seth, too) will get through this. Hugs! Love you.

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  16. I'm sorry, Elizabeth. :( It's so hard. I think I told you before my brother-in-law is autistic. It seems like he's a bit lower functioning than Mason, but to be honest with you, they all, my husband included, still remember how terrible those sessions with therapists were when they were trying to train him to be able to live in the world to his fullest potential. But it was worth it. Just keep doing what you're doing. You seem like amazing parents and his teachers sound amazing too.

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  17. Umm holy tears. Geez I got going. Potty training is so tough. I'm so sorry sweet momma. That sounds so horrible and emotional. It also sounds like it taught both of you a lot and that through the tears and frustration you'll both keep pushing trough and that the love you agre is amazing. Way to go momma.

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  18. Oh my goodness Liz! I also feel for you! So many tears. You are seriously the best advocate for Mason; you were born to be his mom. That sounds like such a tough day. I think there is such a fine line between "giving in" and trusting our mama instinct. Even with kids with autism. Potty training can be hard on any parent & child. Hopefully mason keeps making progress.

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  19. Oh girl, just echoes and echoes of my sister. I don't remember exactly how her training went down, but I do remember it was hard and that I did some of it... but that's about it. But the tantrums and having to teach her things like that? Oh, I remember that.

    Just remember, you are doing the right thing, and he absolutely knows just how much you love him. It WILL get easier, I promise. <3

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  20. Oh honey, I'm just now reading this and crying big fat tears for you. I can't imagine how hard this must be for both you and Mason. I'm sorry you're struggling right now. I know how awful it feels to watch your kid cry and get upset with you. I feel your pain, mama. This was so beautifully written though, I felt like I was right there in the room with you. I know by sharing your stories and struggles that you are going to help others going through similar situations that feel alone. I hope you know that we're all here for you, anytime you want to vent or cry or share a virtual drink with. You are an amazing mama and the absolute best one Mason could ever have! He's an incredible kid because you and Seth are so good with him and push him to achieve things that others wouldn't be able to. He's so lucky to have you and you guys are so blessed to have that sweet boy in your lives.

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  21. Oh Liz... these are the posts that I LOVE from you. First of all you are an incredible mom, like one of the best moms! This would have been SO hard for me too, letting someone else take the reigns in your parenting, especially if your parenting style is not the way they're trying to tell you to go.. I just can not imagine. Girl we are STILL having potty struggles over here with Scarlett, when we waited until the time was right it was relatively easy BUT she still holds ALL the time and it's so frustrating for us... like a daily struggle. Potty training has been by far the most challenging part of parenting so far for us.

    So many hugs to you! XO

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