Sunday, November 27, 2011
Thanksgiving went wonderful! Not one melt down!!! We were gone for 10 hours and he didn't cry once! So proud of my little man. Was worried about going for a while and wondering how he would react to so much stimulation. The boy never stops suprising me!! This school has done wonders with him and he handled everything so much better than a month ago! So nice to see him look at people even if it was brief. He was smiling and doing his own thing! Life is good and I am THANKFUL for that!!
Monday, November 21, 2011
Why is it that weekend days fly by so fast?? The week always seems to go slow unless your on vacation! Had a good weekend though, got some much needed cleaning done. Have a short week this week, with Thanksgiving coming up on Thursday. Really hope Lukas is ok with it all, he loves going to school and only has 2 days this week. Really hoping they find a Speech Therapist soon. His just up and quit on him last week?! It should be illegal to do that to kids, especially ones who crave and need structure and get anxiety and hate change. He is just starting to babble again and I definitely dont want it going away. I encourage him to talk often but it only comes when he wants it too. Maybe I should just let it be? Or do I encourage but not too much just to keep the option there? Its just sooo nice to hear is voice after soooo long. But I have been told by everyone who works with him, he likes what he likes and knows it well lol! He is soo stubborn...typical man lol! Very much looking forward to spending time at home with both my babies though. I have 2 days off school a week and its gone before I know it. I need to make a school activity for Emma so she doesnt get jealous when I work with Lukas. When he gets in the mood he to do activities I jump at the chance but Emma tries to control everything and take over and I cant blame her she is only 3 and doesnt understand why its soo important I have that time with Lukas. He gives up easily when she is around and I am not sure why, maybe the over stimulation? Speaking over which, he has been making the cutest, weird faces while eating yogurt lately!!! Its like the cold is too much but he swallows it and asks for more everytime LOL! I need to get a video of it, its soo funny! Well its time to start my week, back to the grind they say. I am babysitting our neighbors little boy who is 2, then I have to take Luke to school, have a meeting at his school, pick him up again, come home make dinner then I am off to school. Busy busy...my day is gone before I know it!
Sunday, November 20, 2011
Sitting in my bed last night going through things on facebook, I happen to come across a video. It was from another mother with a child with Autism. For whatever reason that video broke through my wall that I have had in place. I just starting crying my eyes out and thinking the worst again. I know my son is making leaps and bounds but its hard to keep negative things away for long. I feel completely helpless at time. It was a very moving video and I was tired, so I am sure thats what did me in. I am an internal stresser for the most part but once it builds up..I have no other option but it let it out..alone in my room crying while everyone is sleeping. I feel better afterwards but I wish I had a different release sometimes. I am soo worried about his future and maybe I am morbid but I think constantly about what if there was an accident and I didnt make it back to my babies? What would happen to him, he is such a mommas boy. Luke and Emma would be devistated of course and not understand but would he get the right care, would he adjust okay..would he know momma loves him more than anything???? Even if I grow old and gray which I very much hope to do..will he get to the point where he can care for himself when me and dadda are gone? People tell me not to dwell on the unknown but I cant help but think of it sometimes. But for now, I just love him and do my best for him. Trying to figure out how to afford his chirstmas presents I put in layaway last month. We have fallen on hard times and it breaks my heart not knowing if I have to choose between food or his christmas. Will another miracle happen for us? I surely do hope so, but as we have had a few miracles this month, I cant be mad if it doesnt come through. God has blessed me with two babies who I love dearly and anything else I can cope with. As long as I have them with me all will be well. Hope to have a good rest of the weekend. Lukas crawled into my bed with morning to wake me up with a kiss and handing me his sippy cup! He is soo goofy at times. This is a little snip I have of Lukas babbling and saying dada.
Saturday, November 19, 2011
Well needless to say I was again a wreck the night before and all the way there. But having two kiddos seems to keep you on your toes, so I didnt have time to worry too much. I met his new doctor and he starts telling me all the results. Lukas got a very clean bill of health and I couldnt be happier. I was terrified that something else worse could have been going on. It was definately music to my ears after everything we have been through and the weekends before this appointment another miracle happened. Lukas out of the blue starting talking again and babbling nonstop. I even caught some on video and if I find a way to post it I will. It was music to my ears, to hear his voice after almost a year of being nonverbal. Also and I cant believe I havent mentioned it yet...(sorry Poppa Jeff) My step dad got Lukas the iPad after watching some news special on it and how it worked soo well with kids on the spectrum. Lukas is now spelling up to 6 letter words on his own, using the iPad and we would have never know if it wasnr for that gift from God and Poppa Jeff. But back to the appointment! I get side tracked soo easily!!! LOL The doctor was explaining what they were looking for and how good it was that everything came back good, but I was impatient. I was in my head saying okay yes yes yes but now what?? He is autistic or where do we go from here. Then he was asking me some questions so I really needed to be in the here and now to respond and he said well...I have read all the papers from the school and yes it is my professional opinion that your son has AUTISM. Now I remember my first appointment hearing those words and losing my mind. Its funny how in 12 short weeks how your outlook can change. I was happy to hear this ( not that I wouldnt love for him to be"normal") but it was a relief to have it in writing. Like I said I knew my baby was special and different and he will always be so in my eyes. As well as my daughter and I know I dont mention her much but its not because she isnt my little princess and I love her to pieces but this is my story about living in my son quirky austistic world and how we cope. I hope to write nothing but good news from now on. But I am sure as there will be sun and clouds..rain and snow..we will have good days and bad days. Thanks for reading this and listening. If it could help anyone I would go through this just to be a support system for someone else. I had help getting me through my darkest of days and I wouldnt want anyone to do this alone.
Everyone knew his appointment was coming up and the time just flew by. With my husband being in school full time during the day, Lukas in school four times a week in the afternoon and me going to school full time at night, time got away from us. I asked all his therapists at the scool to write an updated evaluation for him and whatever their concerns were and his progress since being with them at Happy Days. They did so and I took them with me for his appointment. I couldnt sleep at all the night before and was such a nervous wreck all the way there. I almost felt like vomitting every where. We get there, do some papers and play the waiting game. They were soo busy I thought I would wait forever but within 20 mins they called us back. She asked me all kinds of questions and tried to get him to do things but he wouldnt comply. She said well before I give a diagnosis, I want to rule out everything. She ratted off EEG for silent seizures, MRI of the brain to rule out degreneratioin of the brain and all kinds of blood work. So I waited to check out thinking we atleast they are being sure and checking everything. I took all first available appointments I could and was set to have everything done within 2 weeks of this appointment. I was happy I wouldnt have to wait soo long for some answers. She refered me to another doctor there at Akron Childrens and said he specialized in Autism and when his appointment was scheduled for, we would get results and a diagnosis, if nothing came back funny. The very next morning was his EEG, they were supposed to sedate him and didnt and it was literally two hours of torture for us both. He broke all the blood vessels in his face and his whole body was red. He sobbed for 2 hours after they handed him back to be. It took 3 people to get him down for blood work and I still had an MRI to do the following week. I didnt think we could go through anymore, it was soo traumatizing to him. I didnt want to put him through any of it. The next week flies by and we are awaiting his MRI appointment when I get a letter in the mail saying I need preauthorization for Lukes MRI. I called his doctor over and over for 4 days and they wouldnt return my calls. So the day before when I was about to cancel his appointment and was soo mad, sad, just plain upset but a miracle happened. The lady in Radiology made phone calls and got everything working and within 45 minutes of the first call, everything was good to go and we could go the next day no problems. I was terrified that it would be the same experience when we showed up, but he WOULD be sedated this time. I took some comfort in that but also was nervous, they had to stick an IV in him to get the medicine to go and would he wake up ok, would something happen while he was under?? The staff was incredible and took their time, explained everything to me and I was satisfied. He had a hard time but not nearly as bad as the EEG. They never made me leave his side and it was over before I realized. Then for 5 days of waiting for his appointment for results and possible diagnosis....
Well I called Akron Childrens Neurological Developmental Center as soon as I was able to compose myself. They said 10 weeks to wait. First I was shocked to learn it was soo far away but they said its the first they had ( not knowing at this time that 10 weeks for this kind of specialist isnt that long) but they would refer me to a special school, called Happy Days. About a week or two later they came over and evaulated him. They said they shared the same concerns and they wanted to get him evaluated by the whole team as soon as possible. Another devestating blow...for some reason hearing it all over again was terrible. I would often wait until everyone was sleeping and cried for hours..always thinking the worst. Would he have a girlfriend, could he talk again, is something worse going on, will he live with us forever? I blamed myself a lot, I was devoured by guilt thinking it was me. I must have done something to cause this. My biggest issue was not knowing what made the change in him and I just couldnt accept that. But the evaluation came quickly and before we knew it he was starting school, four days a week for 2 hours at a time. First off I had such a huge anxiety for him..to just leave him!!!! I cried almost the whole time with worry his first day. School was very rough at first for all of us. Then he would only cry once in the room but stop after I left..then he started walking himself to class and not saying goodbye to me. But this school was a blessing. He now points off and on, he is babbling again and he does things beside watch movies and rock on his chair. All within 7 weeks of starting school! They are a blessing there, so nice and calm with him when he can be ..not so calm at times.
I always knew my little boy was special. He was completely different from my daughter ( who is 3 1/2 now), but different is good. No one can be the same or we would all be zombies! I was internally stressing about Lukes 2 year check up for awhile. See Luke was crawling early, walking early, saying momma and dadda, playing with his big sister and toys. Then it happened, before I could realize..everything started to go away. Over the course of a winter I went from having this baby boy who loved everyone and loves to smile to someone completely different. He is nonverbal now, doesnt play with anything or anyone and definately doesnt like change. So on August 22,2011 I take Lukas for a well child check and she says she has some concerns. She said I will be right back I am going to have you take a test. No clue it was the MCHAT and what the heck that even means! He had all 6 critical and 15-20 red flags. I was devestated! I couldnt breath or soak in anything she said expect one word AUTISM. Now I knew something about it but not much and when I thought of it, I thought of the most severe cases. She sat there with me for almost an hour while I cried. As soon as i left I called my husband and told him and I think he was in shock. I called my mom and she was soo upset but she thought so too but didnt know how to tell me. Then started the phone calls to get him seen and the worst part of all..WAITING!