Monday, January 30, 2012

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!)

Friday, January 27, 2012

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. ;)

Wednesday, January 25, 2012

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: . 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.

Sunday, January 15, 2012

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 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.

Wednesday, January 4, 2012

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!

The Good and the...Not So Good

I keep being told that things will get easier as my son gets older. So I wanted to reflect back and list some of the things that truly have gotten easier, and maybe some of the things that have gotten harder, over the last few months. The good list: 1. My son has actually started using his imagination! It took a long time, but at 4 1/2, I can say that he is finally playing with his little brother. It is usually the same story or game...spiderman, "cooking", hide-and-seek...but, nevertheless, it is play. 2. He seems to be easier to reason with. Or maybe bribe? If you don't stop "x", then you can't have "y". He does not remember consequences for the most part, and sometimes (or most of the time?) rules go in one ear and out the other, but we can get through to him with a little less chaos. Which brings me to my next point... 3. Tantrums and meltdowns are shorter. Oh, yes, we still have them...loud, kicking, screaming, hitting, crazy meltdowns...but they are, for the most part, getting shorter. Maybe it's because of the bribing??? (See number 2) :) 4. He is able to communicate better. No, a stranger could probably still not understand most of what he says. But he has learned to use the words or signs that we understand to ask for what he wants. I know that we are extremely lucky in the fact that he is not totally non-verbal. And his baby brother understands him completely! Seriously, I think they just have that connection! 5. He is easier to take out of the house into public, as long as we remember that the trip has to stay short and simple. And, even then, it's sometimes not predictable what will happen. We've learned that it's okay to make a quick get-away. Along with the good comes...the not so good: 1. His screams have gotten more ear-piercing, if that is even possible. The older he gets, the louder his voice can go. And he really loves to scream. It's his way of saying, "Hey, I am frustrated!!!" 2. He is strong. Not that being strong has to be a bad thing, but when he gets mad...well, it's hard for me at times to control him so that he doesn't hurt himself without getting hurt myself. Again, the older he gets, the stronger he gets. That's just reality. 3. He is licking everything! I knew that this was a very common trait of children with autism, but we had not seen a lot of it up to this point. He mouthed things in the past (still does), but the licking is fairly new. Anything and everything gets licked, including us...yuck! There's my list for now. I should probably revisit it every few months, just to see the progress (and maybe some of the regression) that we have made. Let's hope the progress wins out!

Tuesday, January 3, 2012

Perfect Enough for Me!

Okay, let me start by saying that I have gone waaaayyyy too long between posts. That being said, maybe we can play a little catch up? I pretty much have the entire holiday season to cover (but I'll try not to bore you!) Let's see what happens... HALLOWEEN: My youngest ("typically developing") son had been talking about this day for weeks. He had chosen both his and his brother's costumes. He would be Woody, his brother Buzz (from Toy Story). Let me also say that my autistic son had no idea what was about to happen. We had talked about it and read tons of kid's books about Halloween. We had talked about costumes and candy and trick-or-treating. But he never talked about it. I was happy for his excitement when we went to pick out pumpkins to decorate. He actually chose one that was grayish in color; I'm not even sure it was a pumpkin to tell you the truth. Maybe some kind of a gourd? And he loved decorating it with "Mr. Potato Head"-like decorations...ones that you just stick into the "pumpkin." And then the "actual day" rolled around. He let me put him in his costume, and was even excited about it! (We were very careful when we picked his costume to choose a very smooth material that was intended for pajamas.) My husband and I had planned the evening very carefully. We would take the two little boys out together. We would take our son just around to the houses in the circle, one of us would come back home with him, and the other one would take little brother out until he was ready to come in. First house...our son was very excited! He ran to the door, watched little brother knock and say trick-or-treat, copied him, and collected his candy. And so it went from house to house in our circle. When we were through with the houses on our street, we asked our son if he was ready to go home. He said no. So we made a quick decision to let him keep walking around with us and little brother a little bit longer. He made it the entire time with little brother! Yay for the first holiday of the season!!! THANKSGIVING: The big dinner was at our house this year. We knew that this could be a very overwhelming day for our son! LOTS of people. LOTS of noise. LOTS of food! Our son loved the appetizers that we laid aside especially for him before everyone arrived. He even moved a chair into the hallway and used the table in our entrance to snack on. He actually did quite well until dinner was served. He and his little brother had high chairs set up next to the grown-up table. Well, maybe he had eaten to many of those appetizers, because he did not want his dinner. After a little bit of a fuss, he settled into his high chair with the iPad. I think I've mentioned before how much I love this device!!! As in, it is Heaven-sent! It turned out to be a very nice day. Yay for the second holiday of the season! Can this luck continue? CHRISTMAS: The big one! Here we go! We decided to put up not one, but two trees this year. We were nervous, because it was the first year that our son would actually have access to the trees at all time. In our new house, we don't have a formal living room that we can gate off. So one tree went in the living room, and one in our sitting room. Both rooms are big hang-out spaces for our boys. With fingers crossed, the trees went up and the ornaments went on. Anything breakable was placed up high so that nothing could be broken easily and no one could be hurt. After the initial curiosity, the trees, for the most part, were left alone, the entire season! Wow! I really did not see that happening for many years. Our next big hurdle? Christmas morning. We knew from years past that our son did not enjoy the excitement at all. He does not have a great understanding of what or why things are happening. But, again, he very pleasantly surprised us. He ran to his stocking and started going through it. (If you want something to compare it to, check out my post from January 5, 2011.) And when it came time to open presents from family, he patiently and excitedly waited for his turn to open each present! We also had a lot of family over on Christmas and did a big gift exchange with all of the cousins. Our son ran around, a lot! But he did it with a smile on his face. Yay for the third, and final, holiday of the season!!! (We are not going to include New Year's Eve because, let's face it, my husband and I would have to be declared clinically insane if we tried to get our son to stay up until midnight to celebrate with us!) This season gave me a very important gift: the hope to look forward and feel encouraged that things are going to keep getting better and easier. The hope that everything we are doing for our son is making some kind of a difference. The hope that he will someday (maybe next year?) understand why we are celebrating and be able to anticipate (maybe even with excitement?) what will happen next. Now, don't get me wrong. Not everything went nice and smooth during this season of celebrations. Not every surprise was met by a smile. Not every visitor was greeted with a hug, or even an acknowledgement. No, it wasn't perfect, but it was perfect enough for me!