Monday, August 29, 2016

              A Momma's First Day of School Jitters...

      As the first day of second grade all too  quickly approaches for HappyJay (my 7, almost 8 year old son) I am full of anxiety and am all out dreading the start of this school year. I received, like everyone a school form packet and in the packet lists the classroom teacher's name; she was kind enough to send a second letter introducing herself and that she is eager to get to know each of her students and their families. For typical families this is usually enough. Because, my kids attend a fabulous school in a great school district, this is enough for me for Sparkles (my daughter who is going into 1st grade) and really maybe it should be enough and maybe it would be enough for HappyJay too if I knew who was going to be his Special Education teacher, and who his aides and their schedules with him were. 
      The school is great, I know I will get all of this information within the first couple days of school. It is hard though, as a mom, to just send your kid to school not knowing what they are doing every second, who they are with, how he is being treated, etc. Then I worry, because it is quite probable ~especially after talking to HappyJay's previous teacher that she will not have him this year, but she will be in the room next to his. Well, that comforts me a little, but I worry that this year too that it will take half of the year for his new Special Ed teacher and him to bond, to know his every quirk, his demands, and how to motivate him. That time is valuable. It is time where he can be pushed, pulled and molded into a better student. I think that is what I am most afraid of. That his time, our time, will not be used effectively and all HappyJay's energy will be put into getting used to yet, another new person where even though I am positive that they will be great and wonderful, just the fact that they are new to him brings disrupt to him and his education. 

     So there is that, along with all of the other normal anxiety and jitters that go along with sending your kids off to school on the first day of a new school year. On the other side of all the anxiety are all of the hopes..which could feed into the anxieties just a little bit.  Like I hope HappyJay makes another friend and that Sparkles makes a best friend and that they can have a group of friends filled with other kids that are just as crazy as they are and that maybe there can be some 'normalcy' in their our lives. That could be a little too Out There, you know, outside the box, the place we keep all of our BIG dreams, but don't tell people about, the ones that sometimes it hurts too much to dwell on for any real length of time, but they wont go way no matter what, Dreams that SCARE you. So that's where I think I get all those extra anxieties from. Let me know your first day of school anxieties, and your big scary dreams & hopes in the comments below!

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Saturday, August 27, 2016

     "I'm sorry"~ In response to your child's diagnosis

     People's response encourages and throws you further into grieving.  It's like your whole perception of your child and who they are- they're likes, dislikes, quirks, misbehavior's',energy, the way they look at lights, how they don't watch T.V. yet come running from the other room to watch each commercial that comes on, and how they line their toys up.

     Your child doesn't change -- the things that you love about him don't either.  One of the horrifying aspects of getting the diagnosis is that, you end up looking examining your child, not only with the love of a mother's [or father's] eyes, but through scientific, cold doctor's eyes as well. You're made to question everything about your child, and you're 'supposed' to point out all of the things that need to be worked on and "fixed".  Neuro-typical parents do not have to analyze every single aspect, character trait, idiosyncrasies, quirk, like, dislike, motor-skills, eating habits, listening skills, etc.

     It shakes your boat. It stresses you out, you get so overwhelmed. Partially, I think that by becoming so overwhelmed it helped out a little bit. I got so "DONE" with the dreaded "A"-word that while I was still focusing on doing the best and everything I could for HappyJay, I said F*** it to analyzing him every second of the day. He is who he is. Autism is a part of him and he is an amazing, intelligent, and beautiful boy with the kindest soul.

     And it dawned on me. That is all that matters. I give him all that I can, that HE is happy and satisfied, that HE gets what he needs so he can be a happy, productive member of our screwed up society in our crazy self-driven world. 

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Thursday, August 25, 2016

Hospital Getaway

     This last week HappyJay had to have dental surgery. ~Needed some cavities filled & get caps put onto his molars, due to grinding his teeth~ 

     Most typical kids would have gotten all of this done at the dentist office with some novacaine and laughing gas. HappyJay had to get it done in a hospital under general anesthesia (they decided to intubate him through his nose) poor kiddo!  But he takes everything in stride and is just such a happy kid, always positive. 
 When we got to the hospital we were escorted to day surgery by a young lady doing her high school work co-op; she was friendly and talked quite a bit. When we arrived at day surgery we got switched over to our attending nurse. As the nurse walked us to our room, HappyJay -with his BB-8 suitcase- tried to pick out a room across the hall and yelled "THIS ONE!". We had to redirect him of course, and as we he entered his room at the hospital, he takes of his shoes, climbs onto the bed and says "THIS IS AWESOME!!" he proceeded to find the remote and told us all "LET'S WATCH TV SHOW!"                          
     Now this is amazing to me in a couple different ways.  Firstly, HappyJay is primarily non-verbal. Within the last year especially we have made exquisite strides; it's really outstanding actually. Anyway, sometimes he talks, more than not he doesn't. Unless he has a need or a want he really needs conveyed. So him expressing completely on his own, that having a hospital room was 'Awesome' really was, well Awesome!
     Secondly Happy Jay has had so many doctor's visits, surgeries and hospital stays that he viewed this as just another simple get-away. He had no fear, even though I informed him of why he was there (he doesn't have any comprehension delays). I think one of the greatest things about him is how happy he -almost- always is. 

    The hospital was amazing, the nursing staff were beyond outstanding, our dentists' were fantastic also, and for all the worrying and praying I did things turned out perfectly.

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Like death & taxes, Rough days are certain.

     "Mama said there'll be days like this, There'll be days like this Mama said" 

      With parenting of any kind this is true, but especially when you are an Autism parent. Days can go from absolutely amazing to the kind of day that you are simply just not sure you'll make it through, especially without injury whether it be physical or emotional.

     The thing is though YOU WILL make your way THROUGH it.  It is Hard, but you will become a seasoned warrior. Don't let your heart get hardened. Pain is a useful tool that will help you push yourself and your child further. Give yourself some time to grieve the what-ifs, the expectations and all of the could have beens. Then afterward REMEMBER Miracles happen and with hard work things that day one you thought were a travesty and impossible will become real and pliable and POSSIBLE.
     Some things may never happen, but sometimes it ends up okay, and even better, more interesting and much more meaningful things take its place. This is not one exercise and then your done with it; this tidbit of advice is very much like shampoo: wash, rinse, repeat; Daily if need be.  Having a child with Autism is hard; but I think the hardest part about our journey with HappyJay is all the expectations that society tells you: what is good, what's right and what's "normal" and that has absolutely NOTHING to do with HappyJay. Those are MY problems/issues/ what have you that I get into my feelings and feel some-type-of-way. When you step back it is apparent that it has everything to do with how we thought life would go, how our plans have changed, how we didn't get to fill out an order form or have to sign on for this adventure.

     I can tell you this, if HappyJay, Sparkles, The Wookie and I could live in our own little bubble without all the outside influences and worries; if we could control every reaction, and interaction that HappyJay has, I wouldn't worry nearly as much as I do. I don't think that Autism would scare me the way it does. What scares me about Autism, as I know is the same very real reason it scares a lot of other Autism parents; is what will happen in the future and what will happen when I'm not around. The fact that there is so much that we do not know gives me so much hope but on the same note there is fear that is anchored to my soul as well. 

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Wednesday, August 24, 2016

Sleep... What's that?

    One of our biggest and toughest struggles right now is sleep.  Being summer and our medication schedule being off HappyJay's sleep has been super troubled-to say the least.  We are currently up all night and sleeping during the day; with school just around the corner about 2 weeks away, this will be our biggest focus for awhile.  HappyJay has been fine and pretty much calm from the time he wakes up until right before bedtime, then it's like someone pumped him full of sugar and gave him 6 energy drinks.  So of course Sparkles feeds off of her brother then too and it becomes a straight up circus until we can finally demand sleep or at the very least for them to calm down and lay still.  Needless to say I am quite tired lately!

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 No-Go Greens

       HappyJay will NOT eat ANYTHING green! Until recently that long list of No-Go Greens included ALL green candy and popsicles too! Happy Jay finally started sometimes eating green M&M's and green Icee pops, it takes a long time for him to finish them and he eats all of the other colors first, but it's PROGRESS!!! Every single other thing that is green is still 'Yuck!' and he will either not touch it at all, or if by some miracle he's taken a bite without realizing that it had green in it, he will Spit the mouthful out.
     The funny thing is, that until he was about 2 1/2 years old he ate EVERYTHING. He loved squash both yellow and green, he ate peas, green beans were his favorite. I have no idea when he decided green was such an awful thing and that if it was green food that was the equivalent of poisoning him. I am convinced that green has a flavor! I am not sure what it is, but I know that he can taste green.
     Maybe green food dye has more artificial flavorings/ chemicals or something? But what about the natural foods? One night I fried up some yellow and green squash/zucchini (breaded it with egg & flour). Of course I fried them up in separate batches because - how dare green touch anything?!- but anyways as I was frying up the green batch the kid, HappyJay, decides to PIG OUT on the yellow squash ~~ I was super excited, as time goes on vegetables of any color are becoming increasingly difficult to get him to ingest.~~ So, he ate All of the yellow squash, came back looking for more, I handed him a green one (mind you he didn't know it was green because of the breading & I try to hide the green food as I prepare it.. in hopes that he'll at least get it in his mouth) took 1 bite and spit it back on my plate.

      Now, I don't know about the rest of the world, but I know I definitely could not taste the difference between the yellow and green squash. So that's my Green story conundrum!

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     My name is Amanda and I am a stay at home mom of a spectacular 7 year old boy (HappyJay) who happens to be on the Autism Spectrum, and a beautiful and hilarious 6 year old girl (Sparkles). 
 I am married to a wonderful, although, sometimes frustrating man (the wookie) who works outside of our home and does youtube as his main hobby.

     I chose the name 'NonTypical Joy' because our life as an Autism family is full of all sorts of joyous moments that typical families do not get to experience. Our Journey can be challenging and the way I have come to get a handle on this unexpected roller-coaster ride of life is to pinpoint and focus on every single positive and every tinsy tiney tiny victory of each of our daily battles either big or small. Some days it is easier than others to be completely engulfed in positivity, but that is how it is no matter what kind of life you lead. So why not share our journey with the world and maybe help another Autism mom/family in that they are not alone either?!

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