Saturday, November 1, 2014

Just keep driving

That's been the story of my life of my these past few months, "just keep driving" or on super rainy days "just keep swimming" "just keep swimming" like Dory in Finding Nemo says. Driving to Seattle two times these week was a night mare but thankfully we were safe. I don't remember traffic getting to Seattle Children's in the morning taking 3 hours. I knew coming home during rush hour was bad. Could be that I don't typically schedule 8 and 9am appointments but these appointments were scheduled for us prior to hospital discharge. Since I drive a lot, over 600 miles a week I thought I could handle it. We barely made it on time for the appointments. On Wednesday the power wheelchair lift that we struggled to get insurance to cover broke as I attempted to unload the chair at Children's. Thankfully I had a back up stroller with me however I probably could have borrowed a wagon or wheelchair for the day if necessary. Driving 2 hour round trip to Puyallup 3 x a week  and 80 minutes to Tacoma 2x a week for probably sounds like too much for most people. That 's exactly what I have been doing since Abe came home from the hospital in September. Twenty five trips over Tacoma Narrows Bridge the month of October. The doctor saw my distress with managing a 5 year old that had major surgery almost 3 months ago and a busy, cranky, teething toddler that she decided decreasing PT to three times a week.I really don't know how moms with multiple kids do it. Yes I only have 2 but right now they both need to be feed, dressed, diaper changed, lifted in and out of carseat, wheelchair or stroller. Other kids are able to put on their own shoes, clothes, feed themselves, climb in and out of the car independently and but mine rely on someone helping them. So it is probably a lot more care involved. Some day mine will be more independent but not yet.  I feel like a failure that I can't continue the five days a week of driving, picking Abe up at school or dropping him off but I just can't do it any longer. Driving in the rain sounds like no big deal since it always rains in Washington but when it's dark, foggy, windy and lately pouring down rain driving has been difficult. Probably explains all the car accidents that I have witnessed lately. I am very thankful that my family was not involved in them, just inconvenient for us to be headed somewhere that should take 1 hour 20 minutes turns into 3 hours and then 2-3 hours home.  Over all the whole team feels that since Abe gets PT at school he will do great. I am just concerned that he won't reach his full potential with 2 days less therapy. In the long run is it probably best for the whole family for him to only go 3x a week for PT. It's gives Abe two full days at school, allows Luke to be home and sleep in, for me to possibly get our house clean including dishes and laundry so next month we can decorate for Christmas. Having Abe at school two full days instead of all 1/2 days will help him learn his power wheelchair better and help his maturity level increase. He was able to read the word "the" on Thursday I was impressed. Abe is able to bring himself to a standing position and maintain in for a significant amount of time. His feet are much more relaxed and his toes don't point down as much as before. He was cleared for the pool. I asked if we could wait until next week for this since I am just wiped out right now. I even forgot Abe's backpack for school yesterday but I did stop and buy him food before he went. The developmental testing by a doctor at Seattle Children's Hospital confirmed he does have a autism diagnosis. There was question and disbelief among many professionals when he was originally diagnosed by a doctor at Naval Hospital Bremerton. Abe is very social and shows concern for other people's feelings.  He was almost 3 years old when he was tested and now that he is older he is exhibiting more characteristics that typically occur with autism. What is interesting is early on other parents of children with autism said Abe needs ABA, my response back "he has many diagnoses but autism is not one of them".  He was diagnosed in 2011 but now that he is older he is not as social as he once was. He prefers to watch videos of elevators on You Tube than play a game with us. I checked into ABA services for Abe and it helped him. Currently he is not receiving ABA services because we lost ECHO benefits. Tricare requires testing to be done upon retirement in order for the child to participate in ABA therapy. His IQ testing was disappointing. I don't have the formal written results yet but I was told he was found to be extremely low. I have a hard time accepting this because he can read some words, talk, count to 100, knows ABCs including recognizing them in printed form and numbers. He does mixed up B's and D's but I have heard developmentally normal for 5 years old. His memory is great too. He knew today was Saturday and he could get the fire truck for sitting on the potty all week. Then he asked what do I get next Saturday. He often reminds me you didn't pick out clothes for tomorrow, pack us snacks. He will misplace something like a toy WII remote and remember when he put it. In some areas he scored 5 years 4 months, he will be 6 years old in February, so slight delay but in majority of areas he scored 2-3 year old age range. I know he is delayed in all areas but still difficult to hear your child has an extremely low IQ. I was originally told would be in a vegetative state if he survives at all. He is here 5 1/2 years later and is thriving, might just need extra help to learn to read and write independently.  I am curious if the results of this testing will result in any IEP changes or changes in services for Abe. The doctor was very kind when she told me the results and was careful that Abe did not hear her. At a school carnival last week Abe said "I did not do it right" and felt the need to return the candy because he felt he did not complete the game probably. This is good and bad. Good that he had the intelligence to know the the ball was the wrong way but bad that he felt he did not do it right which can contribute to him not wanting to try in the future. It broke my heart and opened my eyes that I need to encourage him other wise he will have low self esteem.  We want to maximize Abe's potential.  It's been a rough month losing respite care. Abe qualified for personal care provided but we need to find someone to do it.

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