Response to questions regarding the "Our Bath Time Journey Post"

A friend of mine responded to my Our Bath Time Journey post with several questions. This led me to the idea of answering them in a blog, so that anyone else thinking the same thing will be able to read about it. Here Goes: “So, just read your blog... I had no idea bath time was that much of a struggle for you and J early on... I was wondering, how was he when you got caught in the rain? Or if he ever stepped in a puddle of water by mistake? Or even if he spilled something on his clothes? Was he ok with these situations or were they tough for him also? “ To her questions above I replied: the answer to all of the below is yes - he had issues with rain, puddles, getting wet, getting dirty, anything on his clothes etc. No one really knows all we went through (other than the psychologist and behaviorist.) It has been a long and draining process. He has come such a long way, but we still are working through some things. To expand my answers to her questions: What would he do if he was caught in the rain: As with many things, it would depend on how he was feeling that day. Sensory issues are a strange thing to those of us that don’t have them. Some days the rain scared him, other days he would scream “I am getting wet or I am wet; dry me off” and then there were days that although he didn’t like the rain, he could tolerate it without sensory overload. All in all, the actual rain was not that big of an issue over the years. If he ever stepped in a puddle: This one is a little more complex. Since he has sensory issues, getting him into certain types of shoes was a battle in itself, let alone into rain boots so that he could enjoy puddles like the rest of the little kids his age. At first, we avoided puddles like the plaque. When he would accidentally step in one, he would definitely “freak out”, wanting his shoes and socks to be changed and not wanting to be wet at all. At a certain point we were able to get this under control enough to get him into rain boots and out into small puddles; yet when his pants got wet while playing in the water he was not able to deal with them being wet and we had to cease play immediately, go inside and get changed. I still recall the first day he actually enjoyed jumping in the puddles. We actually took pictures. I would have let him play for hours if he wanted to because it was such a HUGE step toward normalcy for him. If he spilled something on his clothes: He would meltdown; insist that his clothes be changed immediately. I would bring at least 2 changes of clothes with me no matter where I went; just in case some part of his clothing got wet. It didn’t matter if it was the rain, spilled water or food; he needed to get out of those clothes as soon as possible. It was almost as though his clothes were on fire. This was definitely something that lasted for a long time. Little by little as his sensory issues got under control, he was able to get wet without an issue. Today, I no longer have to bring changes of clothes and he no longer gets hysterical when his clothes get wet. Not only is he ok with puddles and his clothes getting wet, he goes out of his way to jump in them from time to time. Telling me now, “mom, it’s ok to get wet and dirty; that’s what kids do mommy”. I remember crying tears of joy when I heard those words coming from his little mouth. Please let me know if you enjoyed this Q and A post. If so, I would be happy to answer any questions you may have for me, related or unrelated to the Posts I have written.

Our Bath Time Journey

Reliving the last 3 years of bath time may not seem like a topic to blog about, yet in my case it could take up an entire chapter of a book. Since this is not a book, I will keep it as short as I can while taking you through our bath time journey; one that went from what felt like torture to finally come to enjoyment. Yes, it took almost 3 years to get there, but we got there. The journey that began with tears and fears has led to smiles and pure joy. When my oldest was less than 2 years old, giving him a bath was utter hell! The entire process took well over an hour. Many nights it took 15-30 minutes just to get him inside the bathroom let alone into the tub. Yes, I tried everything; even seeking outside guidance but until his little brain and body was ready to embrace bath time all we could do was work on giving him the tools to help him get there. You may be thinking to yourselves; this is nuts; she must have just not known what to do with him; how can you let your child control bath time like that……….and the comments go on and on. I am about to take you through my journey toward bath time enjoyment. My earliest memories of my oldest in the “big boy” bath consisted of him screaming bloody murder, grabbing onto the sides of the door frame with all his might, me fighting back tears that many times came streaming down my face and then once we finally got into the tub, he would do everything in his power to get out. He would scream, try to hit, scratch etc. and try to crawl over the tub. It didn’t matter what we did…a little water, a lot of water, bath toys, and bubbles….he still wanted out. After months of barely getting him into the tub he finally became comfortable enough to stand in the tub, just long enough for me to wash his hair and body off without screaming. As long as he was in and out in less than 1 minute we were ok. A few months after that I decided to see how he would react if I had him take a shower with me or my husband. What I found was that he seemed to really have fun in the shower with mom or dad. As long as the water was running down his little body from above he seemed quite content. So for the next 9 months our little guy showered with mom or dad. He was able to play in the shower with some water toys, paint on the walls, wash his body and his hair and go in and out with a smile on his face. Sometimes he would just keep saying more, more because he liked it so much. This was a far cry from how we started out with bath time. Trying to get him back in the tub was another story. After 2 summers of swim lessons; and at age 4 we decided to try the tub again. He seemed to have conquered his true fear of the water so we thought it was a good time to try again. While he was no longer grabbing the door frames and screaming bloody murder, he was still in no way, shape or form, enjoying his time in the tub like I remembered as a child. I would have to be dragged out of the tub at his age. Put me in there with some bubbles, crayons and water toys and I could play for hours. My youngest screams when we take him out of the bath because he just wants to stay in and play with his toys, splash and goof around with big brother. Not the oldest. This little guy did not feel that way about bath time at all. We eventually found a way to get him comfortable sitting in 2 inches of water for at least 5 minutes to get a good bath and even a moment or two of fun. We tried more water toys, paints etc and although he was tolerating what was going on, he could still do without it. Then one day, around 4.5, little by little he began to enjoy the tub more and more. I am not sure if it was because he saw his little brother getting bathed; sitting in an inch of water, splashing and laughing as we gave him a bath or if something inside him just calmed down enough to be ok with being in the water. Whatever the case; maybe swim lessons helped him realize that the water was his friend and not his enemy. He was like a fish in the pool and seemed to be at complete peace, in his element and completely relaxed. Unlike the anxiety filled episodes that took place for the last few years in that small little bathtub. Finally, his anxiety started to ease in the tub and mom and dad were able to get him a bath without wondering what sort of explosion was going to happen around it. For some reason, in his little mind, for a long time, water was really scary in that bath tub. Today, at 5 and a half we can’t get him out of the tub. He wants the water as high as he can get it; as hot as we will let him have it; as many water toys as we can fit; bubbles when they are available and even his little brother to share in the fun when he feels like company in the tub. Talk about a 180, yep that was my child. For those of you that follow my blog; after 2 years of stressful, crying nights for bath time, we realized that his sensory issues, anxiety and fear of the unknown were causing this little boy so much undue harm. As we uncovered the underlying issues, we were able to find ways to help him deal with these “disorders” and teach him how to “cope” and be comfortable in his own skin. Instead of giving up on him or ourselves; we worked with him and several professionals. All of the time and effort our family put in opened an entire new world for our son. A world filled with comfort, smiles, laughter, pure joy of life and a love of water.

What are you searching for?

If I would have given up on figuring out what we were dealing with and what sort of help we were after with J; we would be nowhere near where we are today with his progress. Would I say he is out of the woods, no, but I will say that I see a lot of great things happening for him now and for his future. We are coming up on our next IEP meeting and so the anxiety begins to take over for me because it took me a long time to get him into the system and now I feel like I have to fight to keep him in. I know that J has come a long way; we have spent many grueling hours watching and learning from many different specialists and because of it he is thriving. J has spend even more grueling hours of his own time working one on one with all of these specialists. He has put in so much hard work and I couldn’t be more proud of him. At the same time, I know that we have a lot of work to do for him to not need prompting when plans change quickly, a timer to be set when he needs to transition from a preferred to a non preferred activity, help to understand just what someone is asking him to do and the list goes on.

The typical person would listen to/watch our son and think that he is a well mannered, well spoken 5 year old that has no issues other than what a 5 year old brings with him. To a person who understands SPD, Pragmatic Language and Occupational Therapy they see the things that we know exist. I am not complaining about the fact that our son has come such a long way in just 3 years that to most people they think I am nuts to talk about what we have been through. Some people don’t believe that we have been through the journey we have and others think that based on what they observe over a day or a few hours means that they can handle our son on a day to day basis. It is truly amazing how often I feel like I have to “defend” myself to acquaintances and even friends and family; literally having to break it down to “101” type of lingo and still many are non- believers. It took me over 2 years to realize that it is going to be impossible to explain to those on the outside, just how much time, energy, focus and patience it takes to just get through each day. All of which has been worth every moment!

To those still searching for answers, don’t give up and for those that are on the verge of giving up; look deep inside and find the energy not to give up! Most go through the fear of the unknown to the denial of anything being wrong with their child, to blaming themselves, to saying it’s everyone’s fault but their own to finally either making the decision to do something about it or to act as though there is nothing wrong. Once you make the decision, go with it. It is a hard and humbling thing to admit that your child is not “perfect”, yet everyone has something going on that they can work on during sometime in their lives. For some, the issues are more severe than others. Sometimes it is a learned behavioral issue and other times there are many other factors clouding what is really going on.

With us, there were underlying causes for our son’s “behavioral” issues. Side by side with some amazing specialists we tracked progress, behaviors, trends and interactions only to come to the conclusion that there were numerous triggers causing his behaviors. In the ABA world they call it ABC’s of behavior. It doesn’t matter if you think your child’s issues stem from outside influences, inside influences or your own influence, it is never too late to ask for guidance from a professional. Any way you look at it; reaching out for help is only going to make your child happier, make you happier and allow all of you to live a happier, healthier life. Of course these are just my opinions, but keep in mind they are my opinions based on several years of actually living it.

Over the years people have told me I was seeing things that weren’t there, that he is just a kid and he acts just like the others and one even told me that I could leave him with them for a week or two and they would teach him how to act. Then those comments made me cry and now, I actually laugh out loud to myself thinking back on some of these conversations. I realize that they had no idea what they were talking about and even though each of them hurt me with their comments, I knew what I was doing was right no matter what they said. I was searching for answers and I found them. From the first time I reached out to a professional, I knew that I wasn’t making things up, but I also knew I was tired of grasping at straws and wondering if my son would turn out like others I knew or if he would ever be happy. I have no regrets about keeping several people close to me “out of the loop” during this journey because what was most important to me was helping my son get what he needed and not at all about “keeping people in the loop” as to what I was going through and how he was progressing.

The biggest reason for my silence with many people was because I didn’t need to be questioned nor judged on my choices and decisions. Instead of spending valuable time and energy trying to explain myself to those that didn’t understand what I was going through or why I was pushing so hard for help; I chose to focus that energy on finding people that could empathize with my situation and lead me to those that could help. My journey is so far from over. It is a road less traveled; yet it is the best road for us.

I write all of the above in this post, because at least 3 times in the last 2 months someone told me that they (or someone they knew) wanted to get help for their child but either didn’t know where to go or just decided that what was going on would just go away if they stopped worrying about it. I am here to say that it will not just go away and that there are places to go, people who want to help and are prepared to help if you can find them. Keep in mind once you find that help; the hard work really begins. Unless you are willing to invest your all into helping your child, it won’t work.

I have a lot of resources at my disposal and for that I am so very thankful. It took me 3 year to gain access to all of those I have surrounded myself with and it was worth every call, every fight, every threat and every tear to get what I have gotten for my son thus far. I would do anything to make sure he has what he needs to be the best he can be. I am willing to help any of you get what you need for your child as well. If you feel that you are out of energy, out of ideas or just plain tired; read my blog and know that you are not alone! It’s just like something I learned as a young child. When it comes to asking a question “if you are thinking it someone else probably is as well, so go ahead and ask your question”.

I fight every day for my son. In fact as we move forward toward his end of the year IEP, I continue to fight for him. While I know he has grown leaps and bounds in the last 12 months, I also know if it wasn’t for all of the in school services coupled with the 12-13 hours of outside ABA services, he wouldn’t be remotely close to where he is today. I know that he still has a ways to go and I am not ready to give up on getting him continued services. He has amazing teachers and support staff around him this year and I only hope that he will have the ability to be surrounded by just as great of a staff in his new school next year.

I had a chance to meet the principal of his new school and see some of the Kindergarten classrooms. I am excited about what next year will bring for him, yet filled with anxiety waiting to find out what he will qualify for with his IEP. All I can do is stay involved, be prepared, surround myself with my “team” and be my son’s advocate. In a nut shell, be the best mom I can be to him. I have said it before and I will say it again. I brought him into this world and if I don’t stand up for him and what he deserves who will?

As with all of my posts, if this helps one person get the help they need for their son or daughter then it was worth the time it took me to write it.