Saturday, March 30, 2013

Spring's Almost Here... Kinda!

     Xander is a summer baby in every way. He was burn during one of the hottest summers in recent history for the east coast and in the mild of a heat wave. When he would cry, all we'd have to go is step outside into the sticky humid air and he's stop almost instantly. He loves being in the open air and feeling the wind blow on his face.

     So the 6 inches of snow we got this past week is just about driving him crazy. In March?! I know it sounds crazy but so far that has been our experience in Western PA. This is the second winter for us here, from our coastal hometown, and the second year of very late winter storms. We attempted early on to bundle him up and play in the snow but it only lead to tears. So no snowmen for us, but you won't here me complaining, I hate cold fingers and they have yet to invent a glove that truly keeps your fingers from freezing after a few minutes. This time though I knew it was coming and took him out the day before for some swinging at the park. Xander would willingly live at a park, on a swing, for the rest of his life if we let him. We have plans someday of a nice big backyard with a swing set for him but those days are a little ways off just yet so the park will have to do for now.

     Passover dinner went off without too many hitches. Xander enjoyed getting to rip up red paper for the "lamb's blood" on the door. We told him a shortened glossed over version of the story of Moses and enjoyed a lovely meal with friends. Easter weekend is upon us now and sadly because Alex works, we are going to be flying sole this weekend.

     He did get some egg dying in with his speech therapist the other day. He was not so surprisingly incredibly good at it and made some very artistic color combinations. In an attempt to get him to eat some of one of the eggs, our therapist convinced me to try some. I can't say I'm impressed because I'm totally not an egg person but it got Xander to take a bite so I deem it a worth investment.

     April is just a few days away. For those of you who don't know, April is Autism Awareness Month. The 2nd specifically is the national support day, so please wear blue and try to spread awareness and acceptance. I look back and think about my own horrible ignorance and can't help but feel ashamed that I judged so harshly and joked so lightly. I now look at every case of a kid being loud or unruly in public as a possible behavior outburst and every exhausted embarrassed mom as someone who might be in my shoes. Sure, they might just be kids having a temper tantrum with no challenges at all but I'd rather err of the side of caution and not judge someone who is living a life much like mine.
Happy Easter From Us to You!!

Saturday, March 23, 2013

The New Doctor and The Changes that Come with Her

     I mentioned in my last post that we would be seeing a new doctor this week and talked about my irrational fear of them missing all of his behaviors and issues and labeling him "cured" when we rely so heavily on services. Well it was completely pointless to worry. She say everything we mentioned and more. She's a very experienced in autism specifically and she feels he's more moderate to slightly severe than the "mild" our therapists throw around. And I tend to agree with her. She made a point to say this in no way limits him or so stop us for pushing to get results and see development. Which was something we never in a million years ever thought of stopping.
    She's suggested we cut as much tv and electronics as possible. So that's cold turkey for us, because there's no explaining to him what limits are and why he can't have more without causing a meltdown so we have just given up it up completely. And I can't even begin to say its been easy, far from it. Filling his every minute with activities was hard before but now without Any sort of down time it's close to impossible. We go about our normal day and he's finding new ways to "help" mommy that he never thought of before. Like waiting until I'm busy folding clothes to reorganize my shoes and laying in the bed while I make it so the sheets aren't too tight. It takes longer to get things done but honestly they are a little more fun this way.

     Rather than stealing the moment to sprint up the stairs and put away clothes or tidy up his room while he was taking in a show, he follows me from room to room watching what I do. We've always had random toys or books in our bedroom or the hall that don't leave those spots, something to occupy him when he happens past them, which helps when my chore is simply too boring for him. We have gone almost a week without shows and so far have only had a few meltdowns directly connected with the change. Diet is the next big adjustment that is coming our way but I don't know too much yet. Whether it will be a gluten/casein free diet or something a little different is still up in the air until our nutritionist has a chance to touch base with our new ring leader. I can't imagine that will go as smoothly as the tv, but fingers crossed!

     We are  truly lucky to have access to some amazing doctors. I'm willing to try just about anything a few times to help him get better results and maximize learning, so their suggestion are greatly welcomed, even if they aren't the easiest things to follow. As far as her thinking he is more severe, I'd rather hear them side with more severe than originally thought and getting him more help than have him fall through the cracks and not get nearly the amount of help he needs. Its not fun to hear your child is more challenged but its like anything else, you buckle down and start making plans on how to help, go through the lists of ideas 'til something clicks and you see a break through, even a tiny one, then you reset and start planning again.

Monday, March 18, 2013

New Doctor Tomorrow and Holiday Plans

     Today is one of those crumby days, the weather is miserable and Xander wants nothing to do with his TSS. It was a lazy morning of cartoons and I can't blame him for not wanting to work after that.

     So tomorrow is another evaluation with a new doctor...yay! (not really) It's a development pediatrician and its great that we were able to get in with their waiting list. I'm praying that they have new, better suggestions for the stimming and sensory issues we've been having. But I dread evaluations. I always feel like we are going to forget to mention something big or somehow they will fail to see the problems and deem him completely "cured" and clap their hands and all of his services go up in a puff of smoke... Okay that's not really a rational fear but I'd be lying if I said it's not one of my worst nightmares. In a time when we is still so far from what is considering "on schedule" for his age, I fear some doctor completely ignoring us and using some insanely permanent (non existent) doctoral power to completely undo the last year of service approvals we've gotten. Crazy I know.

     On a completely different note, we are gearing up for one of my favorite holiday seasons. When we lived back in the big house with all of my family, Resurrection Sunday dinner was MY holiday meal. I was given the kitchen and I went crazy making all of our favorites. This year we are having a Passover dinner too. Alex tried to plan a full Seder but with all that has been going on we were unable to get all the things he'd need. But we are having friends over and I'm planning a fun (and simply) story of Passover for Xander. We will be letting him paint red on some large paper and cutting it out to go on the door frame, giving him a more hands on part in the holiday. Alex was raised with some of these holidays, like a Seder in the spring and Hanukkah in the winter along with the Christian holidays. I'm looking forward to making a paper menorah for Xander to "light" next year, when he will be a little more interested than he was this year. It will be nice to have two extra people to cook for this year. Going from 7-8 adults down to two is a huge change that feels all wrong for major holidays. I'll have pictures in a week to post of the meal and festivities and hopefully a positive plan from the development pediatrician before then.

Thursday, March 14, 2013

Brick Walls, Fine Lines and Little Wins!

     Xander has always been a "sensory focused" patient in the eyes of his therapists, and for good reason. He's constantly seeking out deep pressure. Hugs and cuddling when he's happy, head banging when he's frustrated, taking running charges at doors and walls when he's bored and jumping the rest of the time. We have had our fair share of almost choking incidents from stuffing his mouth full of food and accidentally boo-boos from running full force into less than soft, unyielding objects. Since being in Early Intervention, we have seen some of the "needs" fade, the stuffing for one has almost completely gone away. But something in the last few weeks has brought it back and brought with it the behaviors that are becoming habits.

     Don't get me wrong, I Love our therapies, all 5 of them (BSC, TSS, O/T, S/T and Nutritional.) But I feel like we hit brick walls with understanding what's a sensory thing and what's a behavior? Temper tantrum and Meltdown? "Normal" toddler behavior and diagnosis stuff?

     It makes my head spin, because I don't see where the lines are actually drawn. When he's having a sensory sensitive day, he has behaviors, getting him to stop or redirect leaded to a temper tantrum because its not what he wants to do which makes him think he's being bad and I'm angry so he melts down. Where does one area end and another begin? I don't like feeling like I just don't agree with the suggestions given, that we've either tried it and have little to no result (listening therapy and brushing etc) or that its just not a possibility, like a swing in my tiny apartment?! We are on the waiting list for out patient o/t which will give him a better chance to get the input he needs but that could be weeks or months before we get a slot, we are just praying its sooner rather than later.

chillin' at the mall with our friends
     On a brighter note, I think we are getting a few steps closer to potty training. We have been using trainer diapers to he can start to learn to pull up and down his pants. And he's getting it! When his diaper is full (he holds his bladder and goes a lot all at once) he starts to take it off!! I know it sounds crazy to be excited about this but its such a big deal for him. We are one step closer and I couldn't be more proud!

     Another exciting little turn of events, yesterday during a trip to the mall, he spotted the Easter Bunny and attempted following him, even tried to get into the elevator with him. For a kid who turns out nearly everyone in public it was funny to see him see a 6 foot bunny and not get upset, but intrigued. We didn't ride the elevator with Mr. Rabbit but we did attempt a quick visit. At first he ignored him but when the bunny handed a piece of candy and a drawing directly to him, Xander looked him square in the face! It wasn't a long stare but still pretty amazing! I'm grateful that my area has sensory safe events because I think we are finally getting to the point where in the right setting we could visit, not this holiday but maybe down the road.

     After going through all the frustrations of the last few days, then the really amazing little wins, after watching my sweet boy fall asleep after truly exhausting himself today, I'm just grateful. Really, truly grateful. I love all the help we are able to get because of where we live and while I get frustrated with the methods at times, I'm still blessed to even have them helping him. And we are still having progress, little wins and new words (sub-mean=submarine) So despite all the annoying stuff there's a lot to be happy about!

Tuesday, March 12, 2013

Actually A Helpful List

If you haven't gotten a chance to see one of the many "Lists of What Not to Say to (insert type of person here)" articles, you aren't missing much. But here's a link to the most recent one I've seen. They are all basically the same, "don't say this, don't ask that and for God's sake DO NOT say this!!" Lots of don't but then what exactly are you suppose to say? I sent this list to the site that posted the list in the link above but since they have ignored it, I'll post it here.

6 Things you CAN
Do or Say to an Autism Mom

1.      Talk about it: What mom doesn't love talking about their kid? Rather than treating it like the elephant in the corner and worried about what to say, just ask questions. As long as those questions are coming from a place of understanding and non-judgment, no one’s feelings will get hurt. Understand that they have gone through countless evaluations and testing, so even if the child seems completely normal to you, have faith that your friend knows her child and has gone through the proper channels to reach the diagnosis that they have.

2.      Make them feel comfortable: Try to be accepting of their methods. More than likely there’s a reason for handling an issue the way that they do. It may not be the way you would do it, but they know their child best, just as you know yours.

3.      Be gentle: Terms and the tone of statements are where the most offense comes from. Avoid referring to their diagnosis as a disease. Whether the parent believes in a cure or not, they don’t see their child as broken or unhealthy. Unless the parent directs the conversation that way, try to stir clear of the latest “causes” of autism, the most painful part of getting a diagnosis is thinking you, as a parent, caused it.

4.      Understand that you won’t fully understand: As hard as you try, you can’t completely understand what it would be like to walk in their shoes. They know that and they don’t expect it. That’s why they have their friends from support groups or therapy based play dates. There are things about parenting your child they wouldn't understand, also.

5.      Let them vent a bit: I’m sure I've drive a few people nuts about being overly sensitive to a comment or situation. It’s common, we all have our bad days when things get under our skin. They aren't going off the deep end or being too extreme, more than likely it’s the combo of a rough day and something rubbing them the wrong way. Go with it. Part of having to be on your soap box to get services and treatment for your child is speaking your mind and sometimes it’s hard to turn that off. Understand that they get frustrated and are challenged daily in ways that might have not even occurred to you, and they need to let a little bit of that out sometimes.

6.      Stand up for them: If you have ever been out with an autistic child and witnessed a meltdown first hand, you know it can be very embarrassing for a parent. Everyone is staring and judging without even considering that there may be more to the story. Be their voice. Politely inform on lookers that it’s simply a meltdown caused by (insert trigger here) and as they can see your friend is doing everything they can and to respect that. I don’t know a single autism mom who would not be grateful for not only the understanding of the situation but an advocate to speak on their behalf.

What do you think? I'd love to hear your thoughts in the comments!

A Little About Us

     I never imagined I'd be one of those autism blog moms, but I kind of get it now. There's so many emotions and thoughts that run through your head in one day, that you might explode if you don't get it out. Even if no one's listening or reading for that matter, it just feels good to get it out.

     One of my first autism mom bogs was "Souls Never Wrinkle." If you give up reading now just to click to her page I will consider this post a success. She's an awesome mom with a true little super hero. They have a wonderful story and I strongly urge you to check them out. Getting to know her is what's inspired me to take a stab at this myself.

     So I'm giving it a try.

This is us, in all of our goofy, fun lovin' glory!

     I'm blessed to have a wonderful family. I have an incredibly loving and supportive husband who works his buns off for us, often forgetting to take time for himself. His name is Alex. We met in high school and got married once he graduated college. We are going on five years married this fall and I look forward to many many more.

     My little guy's name is Xander. We've called him some variation of "Bean" from day 1 so it seems natural for that to be a nickname I use on here. He's 2 1/2 years old. He's amazing, and I'm not just saying that because I brought him into this world, he really is. He's a smart, clever little spirit who's always getting into trouble, not in a malicious way, just a side effect of his constant need to explore. He loves to jump. We have a trampoline in the corner of our living room because putting it away never seemed to be a real option. If jumping is his favorite activity, cuddling is a close second. He takes advantage of every chance he gets to squeeze himself into my personal space and after a while you get used to watching tv with a toddler behind you on the couch or using the sewing machine with him standing on the seat next to you.

his first snapshot, needless to say he wasn't happy about it.

     Part of who he is is his diagnosis. I honesty think he'd be a totally different kid without all of his "challenges." I know it sounds cliche but we kind of always knew he was different, but not in the way you would expect. We saw his differences but didn't really see any downside to it. For example, other moms would complain they could never get things done because their babies would spend five minutes in their jumperoos before screaming to get out. Xander would easily spend hours in his and scream bloody murder when we took him out. He was an easy baby, as long as he was wrapped up tightly or in a snug sling.

     Even when we discovered his absolute fear/hatred of grass we didn't worry. We just put long pants in the middle of the summer and tried to work through the hyperventilating fits and after months of trying he gradually got more comfortable. This was about the time that he also started checking every surface before walking on it. We just chalked it up to being one, new to the world and unsure of his walking abilities. It got annoying when he would insist on walking but had to stop every two steps because tile colors had changed but we indulged him and that too after a while, went away.

     This whole time he never really said much, some sounds and chatter but not really words. His doctors didn't seem concerned so we just took everyone's advice, take boys developed speech slower, and just sat back and enjoy the silence. We always figured one day words would just start blurting out and we'd never be able to shut him up, (which is kind of like what happened but only after starting speech therapy.) By his 18 month appointment, he had 3 words. This time the doctor recommended speech therapy, which then became speech and occupational therapy, when they noticed all of his sensory issues. All along he had be "helping" himself with jumping, rough play and cuddling to meet his deep pressure needs. After months of therapies, they suggested a formal evaluation and that's when he got his diagnosis of PDD-Nos.

UPDATE: (4-17-13) We are currently in the process of a diagnosis change from Nos to Autism, to open up more opportunities with schooling and services.

Now he loves grass...and mud.

     We are still working with speech to gain more words, he's at 35 label type of words (ei: cow, horsey, piggie, giraffe, colors and shapes etc) but using language as communication is still outside our reach right now. His sensory issues are a constant battle that I'm praying we can get ahead of one of these days. We've added a nutritionist to the group too for my picky eater.

     We are so proud of how far he has come, how far we've all come. We are more attentive patience parents. Yea, we still get frustrated to see him struggle but that's something ever parent hates. But without challenges, we can't truly appreciate what we have achieved. We are grateful for this chance to slow down, take every tiny win as a huge victory and learn patience in a whole new way.

Thanks for reading and there will be more to come so stay tuned.

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