Sunday, January 9, 2011

Reality Check

Since beginning this blog, my ultimate goal has been to be open and honest about our life as a family with special needs. While I have attempted to keep my wording "friendly", the contents of this entry may turn the stomachs of some who read it. It deals with our recent experience with Dylan and the stomach flu. Having said that, this is a real aspect of our life and, as always, God is at work in my life.

Every now and then, I get reality checks when it comes to Dylan's development - emotionally, physically, mentally and socially. I am fully aware that Dylan ranges anywhere from a three year old to his current age of ten. I rarely think much of this range - it's simply who Dylan is. But this weekend I got a huge glimpse of where he's really at in certain areas. It's been hard to swallow.

On Saturday morning, Dylan, Jeremy and Savannah all awoke with the stomach flu. Gregory had just been through it and it was looking as if he might be the only victim. I was wrong. I woke to hear Dylan wailing in his bedroom. I opened his bedroom door and found him covered from head to toe with vomit and well as his entire bed area and the floor. I soaked in what awaited to be cleaned and am fairly certain I will never be more thankful for our tile floors. Within seconds of discovering Dylan, I heard Jeremy yelling and crying from his bedroom. It was gonna be a long day. I hadn't had a chance to check Savannah but if she hadn't started in yet, it was gonna happen - soon.

I told Dylan to stay put and that I would be right back. I had to get Rob up - who, off course, was still sleeping soundly. Within moments, I was back in Dylan's room. I grabbed one of the many packs of baby wipes in our home and undressed him. I realized I had to get his feet and hands wiped down before I could take him upstairs for a shower, or else we'd be cleaning the carpet as well.

I managed to get him upstairs and handed him off to Rob for a shower. Jeremy was next. Within the hour, we had three sick siblings bathed, dressed and laying on top of blankets on the couch, with towels surrounding them on the floor. Rob collected bedding in trash bags and lined them up to be rinsed out prior to entering the washer. Things had settled, but only for a moment.

I suspected Dylan needed to use the toilet and had Rob take him. I needed to get the laundry started - I had at least seven or more loads to do. They entered the bathroom and Rob helped Dylan undress. Although I wasn't in the bathroom initially, I could hear Dylan throwing up and sensed Rob's patience was being tested. It was time for mommy to intervene. I entered the bathroom with Rob scrambling to find something for Dylan to throw up in, as in that same moment, Dylan had begun to have diarrhea - except he wasn't sitting on the toilet. Rob managed to get him seated on the toilet and I got a bowl placed beneath his mouth and then quickly ushered Rob out of the bathroom.

I knelt beside Dylan, holding the bowl in front of his face. In this moment, even though Dylan is the size of a ten year old, he was really two, maybe three, with how he was able to handle himself mentally and physically. My heart broke for my sweet boy. He was confused with what his body was doing. He was overwhelmed and could not communicate his need to both throw up and use the toilet, even though he can speak fairly clearly. He was weak and tired.

As his mother, I was overwhelmed with a wide variety of emotions. We've made huge progress in regards to toilet training Dylan, but, as I sat in the bathroom, I realized just how far off we are from complete toilet success. My mind drifted to how I had found him that morning. It was obvious that he had thrown up more than once, but Dylan did not grasp that he should go to the bathroom to throw up or poop or find us for help. He just cried.

Obviously, Dylan has Down syndrome. However, I have long suspected he has Autism as well. It is typical for individuals with Down syndrome to have Autistic tendencies, but some do have a medical, dual diagnosis. No, Dylan doesn't have an "official, dual diagnosis", but I know in my heart he likely does. Whether or not we should pursue the "official" title is debatable. Dylan already receives all appropriate services and many of the techniques used with Down syndrome are the same ones used for those with Autism.

Many of Dylan's peers also have Down syndrome and there is no doubt they are all very different in their development. However, many of the areas that Dylan continues to significantly struggle in are areas that many with Downs begin to out grow by his current age of ten. In the research I've done, these areas are more "Autism related" than "Downs related". My experience with Dylan this particular morning was no exception.

After Dylan finished using the toilet and stopped throwing up, he got up. I got him cleaned up, re-dressed and settled back on the couch. Now it was time to go back to the bathroom and begin cleaning it. As I scrubbed the floor, toilet and removed the rugs to be washed, my heart sank and reality hit. Putting Dylan in underwear and sending him to the bathroom completely on his own is still very far off. His ability to handle himself when severely sick is even farther off.

As the morning progressed, I continued to get reality checks. I rinsed out all bedding and clothes and had specifically decided to do Dylan's last. As I began to pull his bedding from the bag and rinsed them, I finally came to the last item - his sheet. It was covered in diarrhea, and honestly, I don't know how it happened, as Dylan was fully clothed when I found him. I looked at Rob and said, "I just can't do it. I don't have it in me to rinse this sheet out....again". Into the trash it went and a trip to store would come later that day. I knew it wouldn't be the last item I'd throw away due to a massive Dylan accident. I always salvaged what I could in situations like this, but I have thrown away numerous clothes, bedding and linen items over the years. He even managed to destroy two playpens by the age of three due to accidents.

I thought of my other children and their development. Jeremy is six and is quickly learning that when he has the stomach flu, his goal is too aim for the bathroom or nearest container. Greg practically potty trained himself at about age three, so he's not far behind, and Savannah is just where I'd expect her be....and this is the same spot where Dylan is, which tears me up.

With each passing day, Dylan grows - sometimes by leaps and bounds, but more often in baby steps. I find myself questioning myself and wonder what more could I be doing - I want to be the best mother for him. I know the Lord chose to place each of my children and I together for a purpose and I ache to see the bigger picture, especially when I reflect on the moments I've described above. But that's not possible. All I can do is push forward and have faith that the pieces will continue to fall into place, just like all the other pieces I've seen put together in the past ten years.

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