Sunday, January 20, 2013

Through His Eyes

Looking back over this week we really had some big eye opening experiences. It really gave us the push we needed to stop and think about how every encounter is much more different for him than for us. Sunday we hit the road for Denton to get prepared for two days of testing. We spent time with family the night before and did what we could to help him settle into what was going to be a rough few days. 
Monday was for sure going to prove a lot of things but mostly just how unique H really was. He is truly much smarter than we have given him credit for and yes we know he is smart but not in ways we had ever truly measured until then. Things he shouldn't be doing he could do but things on his level he struggled to accomplish. She again confirmed that we are dealing with some serious sensory and speech delay issues. I was sent home with a crazy amount of paper work and sad. That was short lived however. As we walked out to the car my phone rang. It was West Texas Rehab and they had been calling to invite us to join them Saturday night at their major fundraising event at the Abilene Civic Center. We had just been featured in the Abilene Reporter News for the services we receive there and so they wanted us to go on stage with our therapists during a portion of the telethon. I was crying. It was so awesome to be given an invitation like that after the morning we had. 
We decided to take H over to Bass Pro to check out the fish and just walk around. It was right at that moment I choose to set back a bit on this outing and see things through his eyes. As we walked in he was in a bit of sensory overload and he just sort of stood there. Once we got going I just watched what H did and only stepped in when it was necessary. He stopped and touch just about everything, ran his hands across items, crawled along certain places. It was fun to see him enjoy a public place and not meltdown. 
Tuesday morning we woke up to snow on the ground! It was a bit discouraging but still it was snow so we made the most of it even when it delayed us a bit. We even took H out in the snow were he clearly hated every second of it! After a slight delay at the office we got the rest of the testing underway. Today was a lot harder. We had to take more breaks and there were lots more melt downs. Dr. Johnson dug a bit deeper asked a whole lot of background questions. Stuff that we had never really brought up about H's birth because we figured it was not important suddenly had a lot of weight on what was going on. 
After one of the last big melt down she had me change H's diaper and calm down a bit. We met with the head doctor and she observed him and asked even more questions. Suddenly we need to do a swallow study and meet with a neurologist. I fought back tears and just continued to listen. As we left her office we had yet another meltdown and went to finish up the testing, ask questions and get a prelim diagnosis. One of the diagnosis we were given has to officially be given by the neurologist. It is such a complicated name the only part I caught out of it was static. We gained the severe SID/SPD and severe speech delay. She also said we need to be in a full day PPCD program in the fall. This would be full day special education. He also needs to add ABA therapy and a few others to his list. That is finally when my emotions took over. I sort of had this anger come over me. Maybe it was lack of answers or just the words coming out of her mouth maybe it was all of it. She was advocating for him and I needed to be accepting of it. She will be included in our IEP meeting in the spring. 
Hearing these things more and more keeps opening my eyes more. I try to be even more sensitive to his needs and experiences. I need to let go a bit more and just see things how he experiences them. While some might think he is being a bit wild and over the top it is usually his way of just adjusting to his environment. When he runs through a new place mostly because he is overwhelmed, when he starts touching everything its because he needs that sensory input, when he starts jumping on things or in place he needs that pressure to help him, when he is chewing on anything and everything its more sensory and anxiety coming into play. When he is flapping his hands, spinning around, flipping on lights he is stimming and this is all things that are just part of him now. 
I will always be his biggest advocate. I will always do what i can to help him. I told his doctors I don't care about the costs of things at this point I want to get him the help he needs and put a price tag on it all later. I want to do all we can and honestly if that means we go without some luxury items we can do it. I will stay up late researching, and looking up all I can and going from various message boards seeking advice and reading what others in our situation are doing to keep on top of things. I think those around me especially his doctors and therapists see this and are more willing to go the extra mile for us when we need it. I am learning I will get out of this what I am willing to put into this. so far it is working in our favor.