Can't help but feel bummmed

As you all know by now my son has Autism. They are supposed to thrive on scedules so I am told. My son does wonders at school on a schedule but at home..sigh.. not even close. He wants nothing to do with a schedule. So over 2 week Christmas break-which did go well- I didnt attempt his schedule at all. Time came around for school again and he went without fuss. I learned he had an awesome day and only forgot things here or there. But I couldnt help feeling like I should have done more. The school pyschologist came around to set up in home appointments with us the next day. Mine is scheduled for Janurary 19th. I cant help but feel insecure about it all after hearing the other mothers talk about there break. Now I know I know I know!!! by now I should be ok hearing about other children because they say once you have met with child with Autsim you have met one child with Autism. All of them are so different, its why its called a Spectrum disorder. Both the other boys talk, one can read well and the other who is 8 months younger than my son is starting to read and they sing songs in class. My son struggles to have any noise come out of his mouth other than a humm. I know my son is very smart and he is making big strides but I cant keep in the hurt anymore. I have been fighting this for weeks. I am not hurt by him and I know its a struggle for him to be in our world and be soo different. I love him soo much that it hurts! I feel like I dont do enough or I didnt do enough over break. I should probably be more forceful with taking the TV away and making him do a schedule. But when he doesnt want to do it, it stresses him out and they say dont do the schedule if he doesnt do it right, then what do I do from there? People tell me to read to him or make him social stories to help him with things but he doesnt pay attention long enough to do any of it. I cant read a regular book to him. He used to love when I would sing to him and he would get very happy and make noises. Now it seems to irritate him. Maybe all this will go away once he is back in school regularly-since there was a break and then a snow storm-school hasnt been a full week yet. But then there comes more fears with that! He doesnt go to school over the summer, so in 2 weeks for a holiday I am noticing things going backward then how can I deal with a whole summer? He need smore therapies and I am not sure how to get them. I want him going outside of school- how do I get those therapies covered? Do I ask his reg peds doctor or do I have to make an appointment with his Neurologist? Where do I find time for this? Its not fair for him to have to wait another 10 weeks because I have to do my externship at night but we dont have time for it during the day? Sooo many questions and I dont know where to find the answers. Sometimes I feel like I am losing my mind. I am very happy and think I might not be depressed then the next day, I am a huge bitch, I cant sleep, everything is irritating and then comes the guilt for being that way all day. Is it just hormones out of whack or am I depressed? The evaluation I took at the neuroscience center says I need meds but who can afford them? Not me! I cant even afford to make a doctors appointment. I thought I would feel some what better after writing all this down, like I normally do but not this time. So much is up in the air and I dont know where to start. I thought I had things figured out...I dont know shit! Things are spiraling out of control but only within me. Everyone else is fine and I put on my happy face and do everything in my power to be there for them but I am starting to close off. I dont want to do crap, I am not motivated for anything and dont know what  to do. I am hoping this passes like all the other times. But eventually this will come again..where I feel like I am losing it and losing everything. I just cant help but feel bummed.

Will Sleep Ever Come?

I have always been the type of person to love sleep. I could take naps or sleep in but since having kids everyone knows that changes. I have grown adapted to lack of sleep for the most part but sometimes it gets rough! With a little girl who has a cold and cant breath at night constantly waking up crying and my little ASD boy who seems to never sleep at all...it catches up to you! Lukas sleep schedule is always changing, sometimes he takes long naps, some short or not at all, sometimes he sleeps well at night and for very long periods but most the time he is up constantly, going to bed late and still walking up early! Seems to come in cycles and I hate when its time for no sleep. I have three weeks left of school and I have done soo well so far, but as we are going over paperwork type lectures I am severely bored and have to fight constantly to stay awake. I know my teacher understands but its unprofessional. What happens when I have nights like this for weeks (which has happened) and I now have a job. I cant slack off? How do people do it?

I am going to be starting a behavorial program for parents called Stepping Stones. It usually last no more than ten weeks and usually by week 5 there are major improvements. I am bringing this up because his Neurologist thinks I need to complete this program before trying meds. Which I agree and disagree with. I am exhausted! I am freaking superwoman 24/7! I have to crash sometime and I dont want it at the cost of my child. I have missed a day of school because my body just shut down and I couldnt stay awake. No one can keep this up forever and when I finally crumble..I feel alone, guilty (because I couldnt keep going) and an emotional mess. I know he is only two and I read stories on my Autism websites and they give me hope. But once you have met one child with Autism you have met one child with Autism. No one knows what the future holds for us. All I can do is pray. I find myself crying and praying a lot these days. God has the power to make you see who is God. I believe in him and love him but lets face it..I am no model Christian. But he has stuck through this with me..made appointments happen..got my son to open up and best of all I get to hear his voice sometimes now. His talking isnt constant but the moments I get are wonderful. I have to be thankful for that. Here is the start to another day, no one knows whats in store. All I can do is take it in stride and hope for the best and be the best mom I can be.

Thanksgiving Break

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!!

Time Flies

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!

Realization Hit

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.

Appointment day for Results

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.

Time for the Official Diagnosis Appointment

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....