Living with Bryan

My heart is very hurt right now. We are in the process of doing genetic testing on Bryan our youngest. He is disabled; what you may ask is the diagnosis? Well that is a question that would take us back to when he was 12 months old and not meeting any milestones. I talked to the Dr. many times (who Bryan happens to be named after). I was concerned, my concerns were addressed and we moved on. Bryan continued to be delayed and it wasn't until about 18 months we received some help. I took my other children in for immunizations and the nurse noticed that Bryan wasn't really walking and talking like a typical 18 month old. She asked me how old he was, what he was doing, and if I talked to our doctor. I answered all the questions; mind you we weren't there for him. She took out a business card, wrote on the back and told me to call ASAP. I did. It was at this time we started into the system. I didn't know it then, but I wish someone would have told me to keep detailed record of who, what, when, why. I have learned that along the way. I wish someone would have told me don't trust the system, they won't tell you the next step. I wish someone would have put me in contact with a support group. I wish, I wish, I wish.....If coulda was shoulda. Now, I know. Now, I tell. Now, I help. We got into the early intervention with speech and occupational therapy. We applied again, and again, and again for medicaid just so we would have some help. Bryan went to early preschool, early speech therapy, and then he turned the miraculous age of 3. Once a child turns 3, they end the early childhood intervention and enter....duh, duh, duh....the "real system". Why is there a difference? Anyway, we began it seems all again. I was so frustrated because doctors couldn't guide us, the school system had no clue how to help outside that system, and some of the early therapists had no idea. It wasn't until he was in private speech, that our therapist Erin guided me into the right directions. I will forever be grateful to Erin. God has a special place for her. I am forever grateful to a neighbor who guided us as well. Along the way we got "little diagnosis"; I'm not downplaying that there is anything as a little diagnosis, but they just couldn't place a finger on what he really had, it was like a bunch of little things that add up to one big thing. I have always in my heart known that there is something out there, we just haven't found it yet. It was last year 2014 that I just wanted to get to the bottom of his diagnosis issue. I wanted to have a definite concrete diagnosis. I talked to his new pediatrician about it, and the referral was sent in. We are seeing a geneticist at Primary Children's Hospital. Dr. Dugan, the geneticist wanted a new neuro psych test on Bryan. We had done one in 2012. We met with Dr. Lawson, the pediatric neuropsychologist yesterday. She stated that we really didn't need a new test, they would use the same testing and the result would be pretty much the same. In 2016 we could do the test again and there would be different  parameters that would be used. She asked if we had filed for SSI (social security income) due to his disability. We had never thought of it before. She said his IQ isn't going to change that much, and he would qualify for it because of his deficit in IQ. She handed us a piece of paper that told us what to take and where to start the process. I am with heart that aches for the future for our son. I ache for the things that he won't be able to do, or will try to do and fail. He doesn't have the reasoning skills to understand some of the things that are happening or will happen. I doesn't mean we will stop hoping for a fulfilling future for him, but you mourn what will not be, and where we are. It's a realization that his IQ isn't going to increase that much to ever be out of the lower percent. It's a realization that we have to get it all laid out in place so that someone is here to take care of him. I love living with Bryan. I love the hugs and kisses, the smiles and the love that abounds in him. He is full of love. Literally, this boy oozes love. He has a purpose. He has the ability to communicate on a much different level that anyone I have ever seen. I look forward to the future, but my heart is still heavy. I know that once we start this next level of paperwork, I will have to keep track and take notes, make appointments, take time off work, and in the process keep in mind the reason we are doing this. Remain happy even though your heart breaks every time you start talking about your child only because it is a constant battle to defend and protect him.