Welcome To My New Reality (Or, Still Open For Business During Construction)

I know, I know...us autism mommies are supposed to have super powers, able to handle it all with a smile. I have to admit, my patience has grown by leaps and bounds in the last 3 years, even though sometimes it may not show (probably especially to my older kids), but I can feel it. There are days when I can read other autism blogs and feel proud to be in the company of such awesome people. Others who are proud because their child is potty trained, finally at age 10. Some are sharing the fact that their child slept through the night, or tried a new food, or didn't spit on anyone that day...and, trust me, they have a right to shout it from the rooftops! Those are big deals! All of them! And I blog about those things too. It's what keeps us from going insane and lets us remember the huge progress that our children have made from the time of diagnosis. But then there are the days when, yep, reality sets in. It's not invited, it just kind of creeps in and plops down on the couch by you. And then the train of thoughts starts running through your mind. The realization that you have a child that will be dependent on you, forever. Forever is a long time. Days are changed, routines are changed, friends are changed, vacations are changed, "downtime" is changed, reality, as we knew it, is changed. And it is not necessarily always a bad thing, but change can be scary. And when you have a stubborn personality like I do, well, change can be a hard thing to swallow. But I work on my flexibility every day, my spontaneity, and my "super powers." All because I love my son and he loves me. How do I know he loves me? Well, today I had allowed my eyes to close while he was playing near me on his iPad, and soon I felt a warm kiss on my forehead. Yep, it's all worth it. Even if my idea of reality is changing.

Thank You...For All Those Who Don't Run Away

I have never announced my blog publicly. I've been writing about our life with autism since 2010, and something still keeps me from "putting it out there." This post may change things...(we'll see how brave I am...)... We had friends over to our house last night that we have not seen in 8 years! 8 YEARS! With moving from here to there, we just haven't lived close enough to easily catch up before now. Okay, why am I telling you this? Because it was their first chance to meet our little boys. One "typical", the other autistic...both perfect in their own way. After they left, I found myself feeling very grateful and wanted to tell them Thank You, very loudly! You see, they didn't get scared off when my son (who will be 5 in the summer) suddenly needed a diaper change in the middle of our conversation. They didn't look at me in a judgmental way when he started screaming because of the new noise in the house. They didn't even shun him when he started spinning and didn't want to stop. And best of all...they asked questions! Yes, they wanted insight into our life with autism. They asked beautiful, thoughtful questions about why he doesn't feel pain, how he learned to be affectionate, what his language skills are, and how the siblings are involved. So thank you to this wonderful family (they know who they are), and all people like them who open their hearts a little more (and don't run away!)

Can You Say INTENSE?

Wednesday was my son's "extra stimming" day, today was his "extremely intense" day! Everything he did today had added intensity...If he was spinning, he spun so hard that he would throw himself against a piece of furniture or against the corner of the stairs (yes, I think on purpose)...If he wanted to watch a certain show, he repeated his request very quickly and loudly while flapping his hands constantly...If he didn't like a certain food that he put into his mouth, he spit it out vigorously and threw the rest of it on the floor...You get the idea? I'm actually surprised (and very grateful) on these kind of days that he will settle down at bedtime, after his Melatonin of course. He's either going to keep me young, or make me old very fast. ;)

Stim Away, Baby!

My son was super stimmy today. I mean totally extra stimmy! But very, very happy! In fact, I think I've linked stimming days to happy days. If you haven't been exposed to the word stim (self-stimulating) yet, think of hand-flapping, jumping, spinning, head banging, spitting, licking, bouts of screaming...well, you get the idea. This momma is tired and glad it's bedtime, because it is exhausting to watch and keep up with all of that stimming! :)

Therapy Notes

I realized during a therapy appointment this week that I should probably be taking better notes afterwards. I think I tend to take some of the advice in and use it, but I think so much of it just slips my mind until it's mentioned again. This was the first week in a long time that my husband couldn't be there with us, so I really am trying to remember everything that was said so that I can share it with him. The therapist suggested picking up a book for potty training since our son is showing some interest now that little brother is (almost) out of diapers. You can find the book here: http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493/ref=sr_1_1?ie=UTF8&qid=1327546385&sr=8-1 . She also told us that we should be looking into occupational therapy again for him sometime in the next 6 months or so. Mainly to help with fine motor skills, such as writing and drawing. Speech therapy has also been mentioned in the past, but she doesn't think he'd benefit from that until he can learn to get a handle on his anxiety better and start trusting more people. Other than that, we talked some about the changes in diagnosing autism spectrum disorders, and the bill that is on the agenda in our state to get insurance coverage for autism. Neither one of these issues should effect our family too much (although I think everyone should fight for insurance rights) because my son was diagnosed with classic autism very high on the charts (from what I understand, the changes will mainly effect those diagnosed with aspergers or pdd-nos), and my husband's company that he works for is out of state, therefore our insurance is out of state. Wow, what a boring post. Are you still reading? That's all my rambling for now...until the next appointment.

Oh No, It's Happening! (Or, What Happens When the Melatonin Stops Working)

Oh no, it may be happening. We have been warned, we have been told to enjoy it while it lasts, we have been told that things will change, but, maybe secretly, we denied it. Our son has been on Melatonin for a year and a half now to help him with sleep issues. It has made a huge difference and we have enjoyed, on average, our son sleeping for 12 hours a night! He never stops during the day, so half of each 24 hour day sleeping seemed about right. But we've also been told that Melatonin can stop working. Oh, I've read many blogs where mommies and daddies are frustrated with the sleep issues that go along with autism. I've been there, I thought...it used to take my son 2-3 hours to calm down enough to fall asleep, and then he'd be up early in the morning (6 a.m., way too early for this mama!) But then came this miracle, Melatonin, which allowed my son to drift off in about 10 minutes and sleep longer in the morning. The dreaded change all started 4 nights ago. It was the middle of the night, 3 a.m. to be exact, when I heard noises in my son's room. I walked into the hall and noticed that his light was on. When I opened his door, he was wide awake standing at his door with his stuffed monkeys waiting for me to come get him. He looked at me with a huge smile and said, "HI!" I turned off his light and in a very quiet voice told him it was still night time and he needed to go back to sleep. I put him back into his bed and, after a drink of water, he got quiet again. The next night he slept until morning and I was cheering inside thinking the night before had just been a fluke. But no such luck. The next night he was up again, wide eyed and ready to play, and again last night. Luckily, after turning off the lights and quietly accompanying him back to bed and giving him a drink, he is still drifting off again. But I am worried for the night where he decides not to settle, and that becomes the new norm. I am worried about the extra lack of sleep that this new issue will create. And I am worried that I may never sleep another full night again, ever.

Update On Our GFCF/Egg-Free Diet

Just a little back story...we were seeing a DAN (Defeat Autism Now) doctor before we made a move to another state this summer. We were trying all kinds of biomedical treatment, including different diets. I have written a lot about this in previous posts, but wanted to give a quick update. A gluten-free, casein-free diet is very popular in the world of autism. It is believed to help with lots of things, including speech and digestive issues. We first pulled our son off of gluten around age 3. We immediately noticed a change in his communication; he seemed to have more speech. Our son was in a little bit of a different boat because he tested positive for allergies to dairy and eggs. So not only did we cut out dairy (casein) next, but also eggs. Our son has pretty much consisted on meat, nuts, vegetables, fruits, and rice products for a year and a half. Before we moved, it was suggested by the DAN doctor that we could slowly introduce some of the off-limit foods back into our son's diet, even those that tested positive for allergies, to see how he did with them. When we got settled and started seeing a therapist in our new area, she suggested the same thing. We first reintroduced eggs and, guess what? He did great! He LOVED this new food that he hadn't had in so long! Behavior stayed steady, and no words were lost. After a few days, we decided to move onto dairy. Whew! That was not the same story as eggs! His behavior went out of control and he became very rigid (stiff!) and aggressive. We gave it a few days, just to make sure he wasn't just having an "off" day, and then stopped all dairy again. We saw one more really bad day after that, and then it was back to "normal." We were into the holidays by this point and decided that we really didn't have the time to deal with extra bad behavior while balancing so many other things, so we waited. On New Year's Eve, we started giving him gluten (a component of grains and cereals.) Let me preface this by saying how expensive gluten-free food is, so we were really hoping this would work! And, guess what? We have not seen any negative reaction! Yay, two out of three's not so bad! I will try dairy again in a little bit to make sure it wasn't something else that was getting to him. But I am so happy at this point that he can eat a little more normal! And he loves it too!