Fragile X Syndrome

I'll get right to the point, rather than summing up our day first. We got more of Mr N's test results back today, namely his Fragile X test and a couple of others. After receiving the results and reading through them, I had to fight back tears, the wording was not clear at all. I was 80% certain that the Fragile X test was positive, but not all aspects of it were. I immediately called the doctor's office to have them interpret the results for me. I could not bear not being certain one way or another. The nurse that took the message said his doctor was out of the office for the day and that she would have a nurse call back Thursday or Friday to explain the results.

The agonizing stress over a one to two day wait was quickly over when a nurse called back five minutes later to say the test results were all normal. What a relief! I cried anyways, but these were happy tears. My little boy does not have Fragile X Syndrome, the only tests that came back abnormal is thyroid and his blood count. I'm quite certain I can handle hyperthyroidism and anemia, they seem quite like a walk in the park compared to some of the other possibilities that they tested.

To summarize....tests normal, mommy happy. Are there words that can really express my utter excitement, relief, and happiness at this news? Not likely. I can't even begin to describe how elated I am at this very moment.

While I realize the chances of him having Fragile X Syndrome were statistically quite low, I couldn't help but be worried. He does have several symptoms that cause reason for concern, but apparently those are just coincidental or related to the autism. In any event, I'm quite relieved.

Sandwich!

The crew is on the mend and it feels so good!!! I'll be rebooting now and be back to finish my post in a minute, Mr N apparently remapped the keys and hitting <enter> opens the screen options screen.

We're back in business!

Today was our first day of therapy since last Monday due to illness, Mr N did quite well. She couldn't believe how much he was talking today, his verbalizing is through the roof since he's been off milk.

Mr N has been playing Starfall a lot more lately and has been mostly doing letter "U". He is also saying the letter, then saying the sound it makes then saying the phrase that uses the letter "Under the Umbrella". Ah-mazing! I had him show off his skills for Katy today, she was quite impressed. He was being difficult and didn't want to do his color matching for her so I intervened by showing him the red train and blue train then saying each color. After he said "red" I handed him the beads to match up for Katy. I was pretty surprised he said "red", I thought it'd be easier to say "blue" so I was working more towards that. He is full of surprises today.

Speaking of surprises, my husband is amazeballs! He brought me home the most amazing surprise ever yesterday!!!!!

Back to Mr N....E asked me to make her a sandwich, while I was making it Mr N came in acting interested. I said "sandwich" really enunciating the consonants like Temple Grandin had mentioned her mother did. He said "sandwich" right back to me! WOW! I made him a sandwich, he did not eat the sandwich. He did eat some apples, though.

Here is where I explain that when I enunciate the consonants, I think I really just talk louder, like you do when you are talking to someone who doesn't speak your language but you really want them to understand you want the white sauce and not the red sauce on your enchilada.

This evening Mr N brought me the keys then said "let's go" so we went for a drive, we stopped by the market since E wanted an apple and Mr N picked out bananas. Mr N ate a banana as soon as we got in the car, which made one happy Mommy! Then we went for a little drive and took a picture of the sunset.

Sickies

The lack of updates is due to illness, I apologize. We have not had therapy since Monday, so I don't have much to update about therapy.

Mr N's eating is getting a little better, but has lost two pounds. I'm trying not to freak out (inwardly I've let the freaking out begin) and just hope we can get him eating more and better each day. Today he actually drank out of a sippy cup, it was milk and we are limiting how much he gets, but at least he is drinking out of cup.

We got a phone call back about his T3 levels and they want him retested before taking any action. So as soon as we are all recovered we will get him in for that. Some of his other tests results have come back, but I have no idea what they mean, so hopefully we will be getting a call back explaining those better. His EEG is scheduled for next Friday, so that should be "fun".

The most interesting thing about Mr N not drinking any milk is that he seems different. He seems more verbal, more inquisitive, asking more questions and he seems like he has more energy. He's even skipped  his nap several days. Maybe more iron is helping, maybe he really needs to be dairy free, maybe I'm just crazy. Well I'm certainly crazy, but I'm sure Mr N has changed dramatically in the last week. We were watching Leap Frog: Number Ahoy the other day and he was counting right along with the movie. Up until that day when he attempted counting it was always "doo, doo, doo, doo, doooo". But when counting along with the movie he had inflection with each number and much closer to the actual sound especially 2, 3, 4, 7, 8 and 10. They were no where near clear enough for an occasional listener to understand them, but watching and listening to him count along I'm pretty sure anyone would understand what he was saying. It was such a beautiful, touching thing. I cried happy tears.

We recently received the information we need to start the progress for transferring Mr N's services from Early Start to the school district. I'm nervous about that whole situation, it's unknown and scary. I was also irritated that in the 2 pages of documents they sent us, they spelled his name three different ways, none of which were correct. I know he's just another kid to them, but he is uber precious to me and don't see how it's so hard to spell a kid's name correctly. Especially when it's not an uncommon name or uncommon spelling.

Again my apologies on the lack of updates, I hope we get over this bug very quickly.

Frustration and Ramen Noodles

While I'm excited that Mr N finally ate something besides Fruit Loops, but Ramen Noodles do not have any nutritional value. I guess we need to make more drastic changes, by only having food that is nutritious and beneficial. Here I thought that giving up milk would be the most difficult part of getting him to eat healthy, but that has been the easy part, now just to get him to eat something with protein, vitamins and iron in it.

We received more test results today, they tested his thyroid, all his levels are normal except for his T3, which is incredibly high. We are still waiting for a call back regarding that. I called to schedule his EEG, but am waiting on a call back to get the scheduled, too.

Mr N was not super cooperative during therapy today. He wouldn't do his puzzles, or color matching, didn't want to paint or play with Play Doh. He did finally engage with Katy and played in the circus tent and played follow the leader with strollers. He refused to put on clothes today, I tried repeatedly but he got upset each time I tried to put his shirt on. I did manage to get his jeans on him after a diaper change, but that only lasted 2 minutes when he realized what I had done, he quickly announced "I don't want it" and removed them. I'm hoping his mood today is based on the weather, not on his poor diet.

Maybe not getting Fruit Loops is in our best interest, he finished off the box this morning. Since then he has eaten Ramen Noodles and is now eating pumpkin muffins. Maybe it's time to make some pumpkin bread and sneak some extra healthy stuff into it (bacon).

Diet

Mr N has done absolutely remarkable giving up milk. He hasn't even been asking for it, he's been asking for food or juice boxes when he needs something. We are absolutely astounded at the lack of meltdowns and tantrums, which we fully expected to be enduring several times a day.

While Mr N has been doing great going without milk, I'm more concerned than ever about his health and eating habits. His main source of nutrition is now coming from fruit loops. Not a significant source of much of anything, I was less concerned when he only drank milk. The first day he ate 3 hotdogs, while I don't think those are healthy, it was at least "meat".

Despite his poor diet, his energy level seems to be normal. I won't lie, I'm super worried about my little man. Can he really live on Fruit Loops? Why couldn't he chose bacon as his go to food? It has protein. Why is this whole parenting thing so incredibly challenging? How do these tiny people demand so much control over our emotions?

In spite of my worries and fears, I do have some good news. E has decided that she loves chocolate milk and has been drinking the chocolate carnation instant breakfast. I can't even begin to describe how happy that makes me. My tiny peanut is getting a protein, iron, other essential vitamins boost every time she has a cup of chocolate milk. Ironically, she absolutely refused to even try chocolate milk when I made it with Hershey's chocolate syrup.

After our very long, stressful week, we opted to take a long hike yesterday to clear our minds and enjoy some gorgeous nature. We had seen an article that the trail beyond Mirror Lake was re-opening Thursday after being closed since a rock slide in 2009. We decided we should embark on the 5 mile hike and see some sights. Like most hikes we take, it was absolutely amazing. Part of the hike took us below the face of Half Dome, then as we took the loop, we could again see the face of Half Dome. We've been to Yosemite dozens of times, we are still astounded by the magnitude of Half Dome and El Capitan. Such impressive sights. There was a tiny bit of water still coming down the river.

It was a gorgeous day, with wonderful weather, to spend with our perfect little family.

Milk Free Day 1

Mr N has not had any milk since yesterday afternoon. He ate two hot dogs for dinner last night, apparently they are more appealing than my homemade spaghetti sauce. But he ate and that is the important part, he also had 3 juice boxes before bedtime. He hasn't really been asking for milk, so I think he realizes that it's no longer an option. Once he is eating more and not relying on milk as his main source of calories we will begin giving him milk after meals.

He hasn't drank any of the carnation instant breakfast or the pediasure,  but E sure likes the chocolate carnation in her milk. It won't hurt her to have more calories, iron and protein.

Mr N did not have a great night, he really wanted his bottle before bed. He and I were up very late, he woke up at 5 this morning and I just offered him his juice box and he drank it then went back to sleep. I'm really hoping we both get a nap this afternoon, since I'm afraid tonight may be equally as restless.

Therapy went well today, it took a little prodding to get him to do his color matching, but he did it. Yesterday he did some good play doh work. He is becoming more and more comfortable with Katy, letting her hold him, asking her for help, letting her support him as he climbs hills, etc. It's great to see him progressing.

When E does her school work and has to circle an object she always draws a little gate on the circle. Adorable.

My brain is only semi-functioning due to the lack of sleep, I'm sure there is more to tell, but that is all I can think of for right now.

Another Appointment

Yesterday the lab results started rolling in, most of them came back normal. The only one that didn't come back normal is his blood count, Mr N's hemoglobin is 6.5 (normal is 11-14.5) so when they phoned with the result they advised us to follow up with his regular pediatrician. I promptly sent a note to his regular pediatrician, only to have one of her colleagues reply stating that she is out of the office this week and that Mr N needs to be seen before next week.

His appointment was this afternoon so we ended therapy early to head to town. We picked up Daddy from work to take with us to help out. We arrived at the doctor's office and Mr N calmly went inside, played in the waiting room for a while and then he was done. Daddy took him outside until his name was called, then we hurried back to the exam room. I had warned them that the appointment wouldn't go well, just so they'd be prepared.

Once we entered the exam room Mr N screamed and cried for a while until I finally got him settled down, then the nurse insisted that we take him out of the room to measure his height. We should have just politely refused, but we complied and that ended his cooperation for the appointment. After being measured for height and weight we settled in and waited for the doctor while Mr N screamed and fought to get out the door.

The doctor did an exam checking Mr N's nail beds, looking at his eyes, ears, mouth and nose. He also pushed on his tummy and looked at his legs. My job was to restrain Mr N. After dropping Daddy back off at work we headed to the store to get iron rich foods. Did you know that Raspberry filled Shredded Wheat has 90% of the daily recommended amount of iron? I'm really hoping  Mr N likes them, they have to taste better than Total.

I fully expected Mr N to be hospitalized for some sort of Iron infusion and possibly a feeding tube. Instead, the doctor advised us to increase his iron intake and reduce his milk intake. The reason Mr N is severely anemic is due to drinking too much milk which fills him up and then he doesn't eat. His diet needs an extreme change and since he won't drink anything but milk in his bottle I figure it's as good of time as any to toss the bottles.

The next few days will be extremely difficult, full of tears and tantrums but my little man must improve before he suffers from more severe health issues.

It has been an extremely emotional, stressful week with appointments and tests. Through it all Mr N has not held a grudge against me, and still gives me plenty of hugs and cuddles which I appreciate immensely. I could not do this alone, I'm so incredibly grateful once again for my rock, Daddy. He is strong when I am weak, he comforts and assures me that Mr N will be fine. I also have been receiving encouraging words of support from my dear friends, whom I adore. Thank you so much guys, you have no idea how much strength your words give me.

Neurologist

Yesterday was a big day for all of us, we departed home at 11:00 am so that we'd have time to stop by Daddy's optometrist and order new frames for him. After the eye doctor we stopped for lunch and since none of us wanted the same thing, we stopped at three different places before heading on to the neurologist's office.

The neurologist has an amazing facility to put the kids at ease and feel more relaxed. Walking in the main doors you are greeted by beautiful butterflies hanging from the ceiling, soft muted colors on the walls and small private waiting rooms for each section. Each waiting room had a beautiful child friendly mural or brightly colored pictures. Our waiting room had a fish tank with all of the Finding Nemo characters, as did another waiting room that we scoped out.

When we first arrived Mr N was napping, which we felt was a good thing. It gave us the opportunity to talk with the doctor a bit without having to keep Mr N quiet. We arrived well ahead of the appointment and since the doctor was ahead of schedule we only had 10 minute wait before being seen. We discussed his history, family medical history, and concerns we had. Then we talked about what tests would be run, what kinds of things needed to be checked for and hopefully ruled out.

Mr N woke up in an extremely unhappy mood, I had rather hoped that he wasn't still deathly afraid of doctor's offices, but I was very wrong. He woke up screaming and just wanted out of the room, she tried to look in his eyes but he was squirmy and screamy. Finally Daddy took Mr N out of the office so that I could talk to the doctor about the next steps, that lasted almost thirty seconds before they were back because Mr N wanted Mommy.

We walked around the waiting rooms, looked at pictures, fish tanks, butterflies, etc but Mr N was still quite upset and not settling down. We went outside a few times but that wasn't helping either. After several rounds weaving through waiting rooms, going outside and then back again; Mr N decided he was ready to get down to walk. He ventured outside and found a nice quiet area next to an emergency only exit where we stayed until Daddy came out from talking to the doctor.

Daddy did not come bearing happy news, Mr N needed blood drawn and we could either do it then and there or at our "local" lab (which is an hour and twenty minutes from home). We decided since Mr N was already cranky and having a bad day we should just make it worse and be done. Surprisingly, Mr N headed back in without any issues, patiently waited in the waiting room at the lab and even walked into the lab on his own. He willingly climbed up into my lap, unaware of his fate. Mommy's job was to hold Mr N and his left arm still while the lab guy held his right arm and drew blood. Mr N did amazingly well, he screamed and wiggled and was quite angry, but it was still about 10 times better than I expected. I was surprised at how quickly his vein was found and poked. They drew eight vials of blood, to which E said "wow, why did baby have so much blood in him?"

I was pleasantly surprised that Mr N still wanted me after being the bad guy holding him down, but he was a Mommy's boy all day yesterday. I didn't mind, my poor achy heart was much less forgiving than his. Mommy could barely hold it together as Daddy was explaining what the doctor had told him while the kids and I were outside. They want to do a 24 hour EEG, which we will schedule after the results from the blood panel come back, and they sent home urine sample cups. We received a call this morning that he has severe anemia, the other results that are in are normal so far, and there are still some tests pending.

We departed the neurologist's office and headed for Ikea, it was our first time there. I am now confident that everyone who loves Disneyland has never been to Ikea. It was incredibly awesome. Our purpose in going was to purchase a swing for Mr N that he can use in the house. I aired up the cushion this morning and got it prepped to hang from the ceiling, we just need Daddy to install it. I let Mr N climb inside while I held it to see how he liked it, he seemed to really enjoy it, so I'm hoping he'll get a lot of use out of it. I had told E on Monday that if she was good all day on Tuesday that we would get her a toy, knowing it would be a long day I wanted her to have some motivation for behaving while being drug all over creation. She chose a circus tent.  I tried desperately to find something smaller but to no avail. Somehow she had Daddy in her corner so I was outnumbered.

I love IKEA, I just want to make sure that isn't overlooked. We picked out a table for the kitchen, picked up a shower curtain rod for the downstairs bathroom, got some construction paper for the kiddos and some kitchen timers, because what little kid doesn't love a kitchen timer? I love IKEA, we need one. I want to live there.

Moving on....since we were already in Sacramento we decided to hit up a sporting goods store to make Daddy's day. We headed across town to Big 5 sporting goods, but they didn't have what he wanted to look at so we headed for home while watching for somewhere to eat for dinner. After much discussion E decided she would like Taco Bell and that we should go inside to eat because she does not have a table in the car. She made a pretty good argument so we watched for a Taco Bell. In the meantime, Daddy was very sad that he didn't enjoy his time at Big 5, so I asked him if he'd like to go to Bass Pro Shop even though it was a bit out of the way. We changed our course and headed for BPS and finally found a Taco Bell en route.

Mr N absolutely loved Bass Pro, the bears were a big hit as were the elevators. I left E with Daddy while Mr N and I wandered around looking at animals, climbing up and down the stairs, and riding the elevator. I'm pretty sure Mr N wants a 4 wheeler, and I see no reason why an almost 3 year old shouldn't have one. After trying out 3 different 4-wheelers he settled on the smallest since he could reach the handles and there was still room on the back for Mommy (he insisted that I try them all out with him). I attempted several times to steer him towards the footwear section so I could look for some hiking shoes, but that was not on his agenda and successfully avoided the area. When Daddy was done looking at his toys he took both kids while I finally tried on shoes. Much to my surprise I found some that didn't make me want to cut off my feet. I will be wearing them around the house all week to ensure they don't hurt.

We finally got home around 11:00 pm and headed for bed, but not before setting up E's circus tent. She thought she might want to sleep in it, but in the end opted for the bed. Mr N, on the other hand, crawled into bed fully clothed and went to sleep.

We were all a bit tuckered this morning so I let the kids sleep in while I cleaned up and prepared for Katy to arrive. E woke up about 10 minutes before she arrived and Mr N woke up about 20 minutes after she got here. E immediately crawled into her circus tent and has played in it most of the morning.

Mr N just peed in his urine sample cup, this is going to be easier than I expected. He keeps opening the freezer to look at it, he's pretty proud of himself.

Yesterday was such an emotionally taxing day, it is so difficult to prepare myself for what is to come. It is so hard to watch my baby get poked and prodded, it's heart breaking to imagine how stressful it all is for him. He is so brave to endure it all, I'm so proud of him. This morning  E even said "baby was so brave yesterday", we are all proud of him. He has a little bruise from where they drew his blood, but it doesn't seem to be bothering him. He did see it and seemed upset, but it might just be the reminder of what happened. He just touched the bruise and used his cranky tone to express his unhappiness.

Autism Conference Part 3 - Temple Grandin

Temple Grandin is an inspiration, she's so passionate about her work and full of information. It was truly an honor to meet her and hear her speak. She also autographed my book.

The very first thing she said is to do something, the worst thing you can do is to do nothing. get them into therapy and stressed the importance of early intervention. Here is where I truly can not get over how incredibly amazing of a mother Temple had. When she was diagnosed with Autism, the doctor recommended her be institutionalized, as it was the typical treatment. But not her mom, she hired a nanny and a speech therapist. Temple didn't talk until she was 4 years old. The nanny spent time playing with her and teaching her turn taking and Temple again stressed the importance of that activity.

Pushing our children to do things, to work harder, and do their work is important, but pushing too hard and causing sensory overload will result in no progress. This made me feel vindicated in my decision to cease the therapy that was causing Mr N to meltdown and subsequently shut down. The entire conference gave me many moments of confidence and reassurance.

Temple explained why many children cover or block their ears, sense they have intense senses many times sounds hurt their ears and inflicts much pain. It is better to have them initiate the sounds. Beth (the OT who spoke prior to Temple) likened it to brushing hair, it doesn't hurt when you brush your own hair because you know what is too much.

Slowing down and stressing the hard consonants is how Temple's speech therapist taught her to speak and enunciate. I am eager to do this with Mr N, this will be extremely beneficial in teaching him to talk correctly.

Temple was absolutely hilarious, the drawings that were shown in her movie "Temple Grandin" were included in her presentation, every time she showed them she would get giddy and excited. She is still so incredibly proud of her work, so passionate about her work.

Temple is a visual learner, she sees everything in pictures. She says her mind is like google images, only very specific. She discovered in her 40s that people thought in generalized pictures. For example, when she thinks about steeples, she has categories of steeples, the first category is the one from her hometown, next are the ones in the town she lives now, then the final category is famous steeples.

She discussed the importance of teaching social skills in the community, how to shake hands, make eye contact, order food, good table manners. Everyone needs these skills, being on the spectrum is not an excuse. Things that should not be tolerated are bad manners, being rude, swearing, sloppy dress and poor personal hygiene. She said it is okay to be eccentric, but being dirty or rude is not. There is no reason to try to de-geek the geek. Again, she is funny.

Temple spent the summer at her aunt's house starting when she was 12 or 13 which is where she discovered her love for animals and prompted her career path. Her mom got her jobs, volunteered her, or got her internships at various places every summer even through college so that she would have real life experience. She talked about what a shame it is that we have kids graduating from college who have never worked.

Another thing she brought up was the importance of children learning to play with each other where the rules and duties are negotiated by the children. Building a sand castle or playing with lincoln logs and working together to build things. She discouraged letting children just play video games all the time (actually she criticized it pretty harshly). She also made no apologies for her lack of political correctness and called it "BS".

Encouraging children at a young age to pursue the things they love will help them. Let them start working in middle school, even if it's volunteer work. She also gave specific job suggestions for people with autism based on how they think. Jobs for visual thinkers, jobs for verbal thinkers, jobs for math and music thinkers, etc.

Every night before bed Temple does 100 crunches, it helps her sleep better. If she doesn't do them it messes her up for a long time. She expressed the importance of getting daily exercise. Getting exercise makes it easier to sleep, getting sleep helps you function. She also suggesting cutting out 10 tons of sugar from your child's diet. She feels better if she gets animal protein for breakfast, sausage, egg and an apple is her typical breakfast.

I purchased two of Temple's books and plan to purchase another one when I'm finished with these. I am also hoping to watch her movie again in the very near future, even though I will cry.

Temple is absolutely one of the most amazing speakers I've ever seen in my life. She commands the audience attention, I don't think one person blinked the entire time she spoke. I really had to laugh when she talked about video gamers (it's not a social activity), she said there are 100 applicants for every 1 job in the video gaming industry. She encouraged getting a major in computer science and engineering (if those are suitable careers) and that there are 2 jobs for every 1 applicant in those fields. I must admit that I see plenty of job postings for engineers, so she must be on to something.

I will probably add things to my usual blogs as I recall them. If you are on the spectrum, have a child on the spectrum, or work with a child on the spectrum, I highly recommend you take the opportunity to see Temple speak if you ever get the chance. She is incredible.

Moms

Katy was sick today, so we didn't have therapy. I started reading "Thinking in Pictures" by Temple Grandin. Just her writing style alone tells me so much about her. So forward, so direct, she does not mince words, she gets straight to the point.

While I was reading and thinking about Mr N, I also thought about all the other mothers out there with kids on the spectrum. I picture all these Mommy's fervently reading, researching, studying to find out how to help their precious children. It's in our nature to help our children, to without stop find solutions.

At the conference there was a lady sitting next to me, she has a 4 year old daughter with Autism. I was talking to her about various books and things I've read about autism, then she mentioned that she's read just about every book out there (including Jenny McCarthy's, she giggled) and even attended some courses at Stanford for PRT. I couldn't help but think what an amazing mother her little girl has, searching for answers, determined to do right by her daughter.

There were booths set up for various vendors, one was a college offering courses on ABA therapy. I grabbed a brochure and looked through it. On the way home I got to thinking, wondering why I hadn't previously considered taking courses? While I believe having someone other than his mother do therapy with him everyday is much more beneficial, it would be nice to feel like I am an expert on Autism, not just on my son. It'd also provide an option for a career path in the future.

Don't worry, I'm not gonna jump in and sign up for classes, I will continue to read and learn as much as I can from books, blogs, and online references. But taking courses is certainly something I'll consider when I'm done with all my books. I am determined to understand my son the best that I can, so that I can help him the best that I can.

Tomorrow is the Neurologist appointment. I am nervous, it is going to be a very long day.

Hiking

Daddy so sweetly let me sleep in today after getting up so dreadfully early yesterday.

We love hiking, it is among my favorite things to do. I love just being in nature, with only nature sounds, only seeing God's wonderful creation all around me, it just feel so right.

During the conference they mentioned the importance of daily exercise for kids on the spectrum, well not only kids but anyone on the spectrum. Mr N typically gets plenty of exercise running around and playing outside, but on weekends we really like to get outdoors and do some hiking, if possible.

We recently purchased a book with the best fifty short hikes in and around Yosemite, the author did all of the hikes with her two kiddos. Our goal is to do them one at a time, take notes about each of the hikes so if/when we have guests they can utilize the book and plan their days accordingly. We started today with hike number 1 in the book, which is a 2.8 mile hike to Lookout Point in the Hetch Hetchy area. It is rated as moderate with a 527 feet elevation gain.

E started off the hike in a carrier, while Mr N lead the way up the trail. It was much different than most of the hikes we've been on so far. Typically when we hike there are lots of pines all around us, but this time there was mostly oak and manzanita. This was also our first hike to a summit, which was absolutely breathtaking. Daddy kept asking me if I got pictures from the point, but I told him it was impossible. There is no way pictures could do it justice.

The kids alternated between walking and being in the carriers. They both walked probably a mile and half or so during our hike to Lookout Point, then both ran around at the top. Unfortunately there is no fence at the top so we had to keep the kids within arms reach since there were steep cliffs on all sides that made us quite nervous about the kids.

After completing the hike I suggested we head up to the lake so we could look up at the point we'd hiked. Of course, once we got to the lake the kids wanted to get out and go across the dam and through the tunnel. We didn't stop there, we hiked about a mile on the trail to Wapama Falls (they are dry right now, so we'll do that 4.8 mile hike during a wetter season, it is hike #3 in our book). The kids both walked the mile in and we carried them most of the way back to the car.

It was a beautiful day, beautiful weather with my beautiful family with beautiful scenery is a wonderful way to spend a Saturday.

Bacon Ranch Potatoes are in the oven, so we'll be refueling our tired little bodies very shortly.

Autism Conference Part 2 - Beth Aune

The second speaker was Beth Aune, an Occupational Therapist, who spoke for 3 hours. I would have listened to her for days on end, what a valuable source of information. So much knowledge, so much experience, so desperately what Mr N needs in his life. But I digress.

She started by discussing all seven of the sensory systems: sight, hearing, taste, smell, touch, movement, and muscle awareness. She suggested using simple language and then waiting for a response, do this for everyone, not just our spectrum kiddos. As most of us know, she said women talk too much and then we don't even give anyone a chance to reply before we reword it, thinking they didn't understand. I can really work on this, with both kids and my husband.

Discussing the auditory (hearing) system, children on the spectrum can not differentiate between random noise and verbal words, there is no priority level in auditory input. Most of us can tune out noises in the room and listen to someone talking, they cannot.

When talking about the gustatory (taste) system she talked about how we do things to pay attention, chew gum, munch on ice, chew on a pen, etc. We are receiving sensory input when we do so and we just naturally do these things. Children on the spectrum just need more in order to feel good.

The Vestibular (movement) system provides sensory input to help regulate. This is why they pace, run, rock, spin, flap, etc. She gave the example of a 17 year old student that refused to walk around the track, he weight was becoming a concern and he really needed exercise. She put him on a treadmill, everyone told her he wouldn't walk, if he wouldn't walk around the track, he wouldn't walk on a treadmill. She showed him how to hold on and turned on the treadmill, then put it on an incline. She said the difference is when you are on a treadmill, you must walk, you have no choice. She said he started walking and loved it, he walked 30 minutes the first day. She said by the end of the week he was asking to get on the treadmill, he not only enjoyed walking he like the sound from the treadmill, the speed, it is very rhythmic and soothing. Another benefit of starting on the treadmill is there isn't a lot of visual sensory overload, nothing changes. When walking outside, you get all the visual input, walking past trees, lines on the sidewalk, grass, clouds, etc. Before long this same student was going on hikes.

While Beth mostly spoke about children who are school aged, a lot of the information is practical for Mr N and will be useful in the future. She talked about how this all effects these kids in school. The arousal state must be started, then the attentive state before they can start learning. If their sensory systems are getting no input then they can't learn.

She next discussed overloaded sensory systems. Once a child is over stimulated, it takes longer to recover. So helping them regulate their systems is going to help them avoid being over stimulated, in turn helping them stay focused in class and learning.

Beth talked about the importance of making learning interesting, making these kids want it. One thing she mentioned that made me feel a little better is that there is not mal intent with children. They don't sit around thinking how they can irritate you and how they can make you cranky. When discussing behavior she emphasized the importance of being flexible, instead of just demanding obedience, if there is a simple step you can take to avoid misbehavior, then do so. If they routinely knock something off a desk (which is probably sensory seeking) then simply move said item. Instead of using timeout, use a chillout, if they need a break, let them have a break. There are a lot of simple solutions that will help these guys avoid being overwhelmed. Allowing them to stand at their desk rather than sit, giving them sensory items to help them regulate. If a child breaks his pencil because he is pressing too hard, then buy the big thick pencils. They do not have the ability to feel how hard they are pressing.

She gave a lot of specific examples and suggestions for tools that help with sensory regulation, I won't bore you with the list, if anyone has a child on the spectrum and would like the list, just let me know.

She described the feeling of not knowing where their body is in space. When adults are in a chair and stand up, they can sit down without looking at the chair. These children will often plop into a chair because they don't know where their body is in relation to the chair.

One of the things she mentioned is something I've seen Mr N do many times. A child will throw themselves on the floor, then have you pull them up by their arms. They seem to like to be pulled across the floor by their arms. They throw themselves on the floor because they can feel where their body is when they do that, they like being pulled because they not only enjoy deep pressure (compression therapy) but also the pulling. She gave suggestions on how to help a child do push/pull exercises to help them regulate.

I could probably write another ten pages about her, but I'll leave it at that. She had so many suggestions, so much that I'll be able to use with Mr N. After hearing her describe her most sensory seeking child that she'd ever worked with, I realized the extent of Mr N's sensory issues.

One last thing, she said not everyone with sensory issues has autism, but everyone with autism has sensory issues.

Autism Conference Part 1 - Jennifer Myers

Yesterday I got up at 3:30am and made the journey to Palo Alto for the Autism Conference put on by Future Horizons, Inc. It was so worth losing sleep. I drank plenty of coffee and energy drinks to get me through the day. I didn't get back home until around 9:15pm, it was a very, very long day.

Now onto what you've been waiting to hear! I am going to break this down into three posts to keep it more organized, and so that I can use it for future reference.

The first speaker was Jennifer McIlwee Myers, she was diagnosed with Asperger's in her mid twenties after her 4 year old brother was diagnosed with Autism. Upon further investigation she discovered a lot of her family was also on the spectrum. Jennifer mentioned that she still has the obsession that we see so prevalent with kids on the spectrum. Many children are obsessed with one TV show and will watch it over and over, her little brother obsessed over Toy Story and now at 24 years old still carries some sort of Toy Story toy in his pocket, he still enjoys watching Toy Story and Nemo. Jennifer carries a map of Disney Land in her pocket because she never knows when she might need it, she also carries another little toy. She said they calm her and make her feel safe. She said that the obsession never goes away, and is likewise obsessed with her husband. Jennifer married her husband 18 years ago, and a few days ago she was at Starbucks when she thought she saw him out of the corner of her eye, her heart started racing and her lips got numb. She has felt that way since the day she met him and still feels the same way when she sees him.

Jennifer presented on "How to Teach Life Skills to Kids with Autism or Asperger's". She really stressed the importance of needing to teach our kiddos skills that will last forever. They need skills that will enable them to function as an independent adult. It is more important for a child to learn how to cross a street safely than to master shape sorting or algebra. They must learn how to do things that will allow them to function in society, shopping, ordering food, crossing the street, etc.

Jennifer's mom did not know that Jennifer had Asperger's, but she did know that she needed to push her to enable her to do things so that she wouldn't be caring for Jennifer forever. She started with little things like making her ask for the key at the gas station so she could use the restroom.

Typical functioning children learn life skills by imitation, being told, and generalization of previously acquired knowledge. Our precious ASD and Aspies need to learn by experiences, lots and lots of experience and detailed examples. They do not generalize. You can teach a child in a class room that a stop sign on a poster means stop, but they will not relate that to the real world. They will not know that a stop sign in the real world means stop, they only know that the stop sign on the poster means stop.

When teaching children on the spectrum life skills every little thing needs broken down into smaller steps, you must prepare for every potential question that may arise in a given situation. Her example was her Dad tried to teach her brother how to order a Happy Meal at McDonalds. Once the cashier asked a question, it threw the boy into a meltdown. It was unexpected and scary for him. It took her dad 15-20 times before her brother mastered ordering his own Happy Meal. I must say, her Dad is an amazing, amazing person. So dedicated and devoted to helping his child.

I mentioned above that Jennifer still carries her obsessions in her pocket as well as her little brother. She suggested putting a basket by the front door that is big enough to hold a small toy, let the child chose one small toy that they can take with them when you leave the house. As the child gets older the toy gets smaller. Once they are too old to be carting toys around, they have to chose something that will fit in their pocket. Children on the spectrum get teased and bullied enough without adding to it by letting them carry around toys that are not age appropriate. We should make it our goal to help our children appear normal.

When discussing which skills to teach, she stressed that long term skills are more important than short term skills. Old skills must be untaught, children on the spectrum don't naturally drop the old skills. If you teach them to raise their hand and say "I need to pee on the potty" they will be 17 years old in class raising their hand saying "I need to pee on the potty". It would be more beneficial to teach them to request to "use the restroom".

Jennifer also touched a bit on Sensory Issues. She mentioned that no one on the spectrum guesses they have sensory issues, they do not know that they are sensing everything much more intensely than everyone else. Her aunt who is on the spectrum takes over a month to adjust to wearing short sleeves in the summer, she can't stand the feeling of the air touching her arms.

We must teach our children how to cope, things like shopping are a necessity, but we must teach them life skills to enable them to do so successfully. Jennifer used to go to the mall every Saturday because she knew that it was considered socially normal to go the mall on Saturday. She hated the mall because there are so many noises, smells, lights, etc. She did this for years before finding out that it's okay to not go to the mall. She also learned after many years that you can go into a store buy what you want and leave. Since she was trying to blend in with everyone else, she did what they do, she'd wander around and look at things for a while before leaving because everyone else wandered around and looked at things.

In this section she also discussed other life skills that will enable these kids to be successful. She mentioned the importance of getting plenty of exercise on a daily basis. More exercise means a better nights sleep. A lot of people on the spectrum have insomnia and exercise helps reduce insomnia.

Next she talked about how we need to set up our children to succeed. Sometimes it requires being sneaky and clever in order to help our children. She gave the example of her little brother needing new winter boots. His mom dropped him off at school then went and preshopped several stores until she found a store that had a good selection of boots in their price range so after he got out of school she could take him directly to one store to successfully buy a pair of boots. Her mom has my utmost respect, what an amazing, caring mother, knowing what will bother our kids and being able to prepare ahead of time to avoid major meltdowns.

She reiterated the importance of doing real life things with our children, over and over and over again. Teach them how to shop, buy food, etc. Then she discussed the importance of breaking everything down into baby steps. Teaching them to shop is a lot of complicated steps, teaching price comparison, teaching them what apples are, planning a shopping trip, etc. When using a picture of an apple, that is the only thing a child on the spectrum thinks an apple is, they don't generalize. They don't realize that apples can be different colors and shapes.

She stressed the importance of teaching kindness, manners, and how to say sorry. Being kind to others makes you like people more. Learning to say sorry will help others like you better. Jennifer talked about how painful a light touch is, she thought people were just being mean when they touched her lightly.

Jennifer also provided suggestions for teaching basic life skills through the use of chores. If your child can do it, let him! If they are physically capable, they should be doing it. She suggested using a chore chart as that makes it more official. It also builds team work skills, if the whole family is working together to do chores, they are working as a team. Give them age appropriate chores to do. Little ones like Mr N can put away their toys, bigger kids and sweep, take out the trash, and put dishes away. She said that just because someone is 24 and obsessed with Thomas the Train does not prevent them from taking out the trash.

Another thing that was addressed was using the things they love to teach them. I've read this in a couple of books, too. If they love trains, use trains to teach counting, colors, math, etc. Use what they love.

It is more important to be able to cross a street safely than have excellent fine motor skills. Jennifer still does not have good fine motor skills, she still spills a lot and has adjusted her life accordingly. She wears all black because it hides spills the best, if she wears a white shirt she takes 5 with her so she can change throughout the day as she spill on them. She can't be taught to not spill, she can only clean up when she does spill. She will never have good fine motor skills. She also mentioned that she has never caught up with motor skills, she still holds a pen with a death grip.

I think I've hit on most of the main points from her presentation. I feel like the more I learn, the more I know my son. Hearing from someone how it FEELS to experience these things certainly makes it easier for me to understand how he's feeling, what things might bother him, what things to avoid, and most importantly how I can help him.

I did not buy her book at the conference, but plan to do so after I'm done reading the other ones that I purchased.

Stress and frustration

Today the coordinator accompanied Katy for therapy and we got to talk a lot about Mr N's progress over the last several weeks. We talked about his speech improving, his aggression becoming less frequent, and his longer one on one times with Katy.

Mr N played outside with Katy for almost 2 hours while the coordinator and I went over stuff and talked about how we really need to get his speech and OT started. She mentioned that she received a copy of his evaluations this morning. Obviously, this is infuriating. I've been emailing the responsible party for months requesting this information and for his therapies to begin. She suggested I email again and copy her boss on the email. Genius. I sent off another email, possibly a little more demanding than the last ones, I received a copy of both reports within 10 minutes. Seriously? Do your job. I understand she's busy, I get that she has a huge caseload, I realize that Mr N is one of millions to her, but he is one in a million to me. His progress is my top priority and I am tired of being ignored.

The email she sent also said that she was under the impression that his speech and occupational therapy would be incorporated in his daily therapy. Liar. Don't lie to me. I'm pretty pissed off about all of this, it took months for her to even request the evaluations, after I jumped through hoops to get the process started on my end. She had said that services would begin as soon as the evaluations were complete. The evaluations were completed in July. JULY, this is now October. He should have been receiving services for many months now, there is no excuse for this crap. Now she is saying he will not be receiving any additional services unless they are incorporated in his daily therapy, but his therapist is not a speech pathologist, she is not an occupational therapist, she is a behavioral therapist, she is not qualified to provide these services. The only good piece of information she provided is that I can use the evaluations to receive therapy at the hospital in Sonora.

Angry, frustrated, exasperated only touch the beginning of how I am feeling about all of this. I feel like she has procrastinated and put off sending the information to avoid having to provide these services. She also said in her email that we could discuss it at Mr N's quarterly progress meeting at the end of October. That's great lady, just keep putting it off. The way I understand it, they will provide these services until he turns 3, then these services are provided through the school district. So essentially if she procrastinates enough, then he'll be 3 and no longer her problem. So if we discuss it the last week of October, which will essentially be pushed until the first week of November, that leaves 3 weeks until he turns 3 and she will make a lame attempt to get someone scheduled to come out for one week prior to him turning 3. I could be wrong about all of that, but I doubt it. My patience has worn thin with these people. My son doesn't have his whole life to catch up, early intervention is the key to success, please stop trying to sabotage him.

Mr N's neurologist appointment is next Tuesday, I've mentioned this a few times. I'm nervous, I'm stressed about it, I'm anxious as to how Mr N will handle it, how I will handle it, etc. I don't think I realized the neurologist is the one that does the blood tests as well as the EEG. I thought the neurologist just ordered the EEG. I'm pretty nervous about the blood panel that will be done. I don't really want to think about or dwell on the possibilities.

Today while Mr N was playing outside with Katy, he got the garbage can and took it to the curb. Yesterday was trash day so it was an empty garbage can, but I really got a kick out of it. He knows where it goes!

I was hoping to report more today, but the kids are anxious to get outside, so I must go.

ETA: The kids are quietly playing inside so I have a few more minutes to add to my post.

Mr N's eating has been less than stellar this week, he has nibbled a bit here and there but hasn't eaten well in several days. Today he refused breakfast, but did eat his morning snack (yogurt) and when I gave the kids lunch, Mr N just walked off, wouldn't even look at it, which seems to be pretty typical. I encouraged him several times to come sit down and eat with sissy, but no such luck. Finally, I tried to just give him a bite of his macaroni and cheese (which was delish, BTW, I used cheddar, typically  I add in monterey jack, too) but he refused. Finally I handed him his hotdog, expecting him to either not grab it or to throw it back at me, but he took it and wandered around eating it.

E has been doing great working on her school work every day. She loves doing her workbook pages and her favorite part is cutting and pasting. The first few cutting sessions didn't go so well, scissors are dangerous machines and should be handled with extreme caution; therefore, she had only used them one time prior to last week. At first, I would hold onto the scissors and paper to avoid any accidents. Once she showed that she can responsibly cut paper without losing any limbs, I allowed her to cut with my careful supervision. I really need to learn to relax and just let her learn to do it on her own, she really does a pretty decent job of cutting for a 4 year old. I guess she doesn't need to have it mastered in one day, by mastered I mean cutting as well as me.

At first, I was trying to do a couple of pages out of each of her workbooks, but she loves the feeling of accomplishments so she likes to work out of the same one until it is done. This week we've been focusing on Same and Different, she is flying through with no problem. I will get her a Kindergarten workbook next time and see how she does, but I will let her finish up the other workbooks she has first. She's about 15 pages into her numbers book and 17 pages into her Beginning Reading book. We've been doing the daily calendar so that she can learn her days of the week and months of the year. She hasn't quite remembered the days of the week, but she just looks at the day and can sound it out pretty quickly. I'm pretty proud of my little princess.

Administering Discipline

Again apologies for the infrequent updates, I'm still not recovered.

I'll start with Saturday, we went to the valley for Daddy's company picnic. It's always interesting doing things with Mr N that we haven't done since his diagnosis. Knowing how better to handle things typically results in a more enjoyable experience for all.

There were bounce houses, face painting, and a balloon guy. Neither of the kids were interested in the face painting (he was painfully slow), but they both liked the balloon guy. Mr N chose a balloon to release and let it fly. E chose a butterfly on a flower balloon. E wouldn't play in any of the bounce houses when we first arrived, but later on she finally got brave and discovered their amazing fun factor. Mr N immediately climbed into the bounce houses and let the fun begin. He didn't seem to care that many of the kids we're much bigger than him and jostled him all around when they bounced.

Mr N's favorite bounce house was the one with the attached slide. He repeatedly climbed into the bounce house over to the tunnel to the slide entrance, then said "help" until I climbed in and helped him up the stairs to the top of the slide, then he insisted that I go down the slide with him. All the jostling wasn't so great for my vertigo, but my little man was happy as could be.

After the picnic had ceased being enjoyable (Mr N needed a nap, as did Mommy) we headed out to run a couple of errands. We searched high and low for a stuffed black cat for E to reward her for finishing another workbook. She had asked for a new black cat last week, but felt she needed to do something to earn it. We decided on completion of another workbook. The first workbook she completed took a couple of weeks, she did a page or two each day. After telling her the deal, she completed an entire workbook in one day, not only that workbook but she did several pages out of two other workbooks.

It appears our precious little E loves doing school work. We've been trying to do it during Mr N's therapy, but that isn't always conducive since he still needs redirection from Mommy. Today we got a few pages done while Mr N was in therapy, then did several more during his nap. She is quite the brilliant little girl, she makes Mommy and Daddy quite proud.

Back to the black cat, it was a failed task. We ordered one online yesterday that E picked out. She asks several times a day when it will arrive, it's going to be a long week.

Mr N loves riding toys down the hill outside, during therapy he headed down the hill that drops off abruptly at the edge of the concrete. He tumbled head over heels, he has a few scratches and had a swollen lip, but was back at it this evening after his nap.

After we came in from playing outside this evening E pulled a movie out of the DVD player that Mr N had put in. He sternly said "go (indecipherable) room, now" and pointed, guess I need to listen more carefully next time to see how clearly he says "to your". I got a good laugh out of it. My little man looks so typical, I love it. He's recently learned how to express frustration by crossing his arms across his chest and uttering "humph". It's freaking adorable. I love, love, love it. He looks like such a typical almost 3 year old. I never thought I'd feel so much joy over some toddler attitude, but it feels unbelievable great to see such typical behavior. I would much rather see him try to send E to her room than hit her or throw something.

I booked the conference to see Temple Grandin, I did it swiftly and quickly without looking back. I'm rather excited to learn from such an impressive individual. This, of course, means I have 4 days to get over my vertigo. I spent today desperately trying to make a doctor's appointment, to no avail.

Yesterday, today and tomorrow

Thursday and Friday of last week are a bit of a blur. I've had Vertigo since last Wednesday. Thursday and Friday bore the brunt of the spinning, by Saturday I was doing a little bit better and since we had company coming I decided to skip the medicine since I had cleaning to do and groceries to get. Saturday was my first day out of the house, we hit the grocery store and I held onto the cart for dear life.

Enough about me...I was so curious as to how Mr N would react to Grandpa and Grandma since it's been two years since we've seen them and Mr N had just begun regressing when we saw them last. Not only was I anxious to see how Mr N would act, but also E.

Much to my excitement both of the kids warmed right up and engaged with them. They thought Grandpa was the best thing ever, E decided he was a horse and she was a cowgirl, she even put a "saddle" on his lap so she could ride. 

We spent Saturday evening visiting, grilling, and catching up while the kids opened gifts and showed off for Grandpa and Grandma. Sunday we gave them a tour of Yosemite mostly by car, we took a short walk to Yosemite Village and the Ansel Adams Gallery, but I wasn't in any shape to do any more walking than that. 

Monday we headed to the Apple Ranch for breakfast, followed by feeding the animals and a train ride. I'm quite sure that our kids amply fed all of the chickens and goats for the rest of the week. Those are the only two kinds of animals they were very interested in feeding. Mr N still held a grudge against the chickens (they nibbled his hand last time) so he only fed the goats, E fed the chickens. 

After leaving the apple ranch we stopped for a bite to eat for the kids (they ate breakfast at home) and then headed to Historic Columbia for more fun. Once again, the old bowling alley was a huge hit, Mr N enjoyed putting the balls back in the return gulley more than he did rolling them down the lane. 

Tuesday morning arrived far too quickly as Grandma and Grandpa departed. Thankfully E wasn't super rude like she typically is when having to say goodbye, her goodbyes and hugs weren't forthcoming but she did allow them to hug her. 

We resumed therapy yesterday morning, as well. Typically the first day back after a weekend isn't super productive, but Mr N did pretty well yesterday. He is mastering color matching and we're working on identifying animals. We built a farm with the Fisher Price Trio blocks, by we I mean I. Mr N also played with the nesting blocks and dry erase board.

I wish I had more to tell about therapy yesterday, but I have to spend most of my time just sitting down so when they'd move to another room, I'd miss it. 

Today Mr N started off therapy with a bang and really did a great job. Then out of the blue he started being super fussy and so did E. I have no idea what triggered it, but I did take their temperatures because the sudden change in mood was concerning. We headed outside to get Mr N settled down, he only wanted to climb in the Jeep and that seemed to help. I took E inside to see if the frog was still in the laundry room, but sadly he was not. Who doesn't like cute little frogs?? It's not like the plague in Egypt when they were on everything, we get a frog every few weeks or so in the house. I don't mind, it's better than tarantulas or scorpions. 

When E and I got back outside Mr N was out of the Jeep, and Katy excitedly relayed that Mr N let her get him out. We spent some time outside, playing, exploring and wandering around (me tumbling around). Mr N did some puzzles when we returned inside and did an awesome job with color matching, I'm so proud of him. I was so excited that he resumed therapy and got some good work done after getting upset earlier in the morning. 

I've mentioned previously that Mr N will need to see a neurologist for an EEG, we have an appointment for October 16. This appointment will just be the consultation, from there they will order and schedule an EEG, after determining which one is needed. I am extremely anxious over this appointment and the prospect of an EEG. No test result could ever change how I feel about my son, no diagnosis will change who my precious baby boy is, I'm not really even nervous over the tests. I am absolutely stressed over the appointment itself, Mr N does NOT enjoy doctor visits, doesn't like strangers touching him or intruding in his space. I'm worried that when he gets the EEG that he'll go nuts with the electrodes attached to his noggin. Hopefully the consultation will help alleviate some of these worries and fears, they are after all a pediatrics neurology center and one of the best ones. 

I randomly googled Temple Grandin the other day to find some information on her and noticed on her website http://www.templegrandin.com/ that she has a conference in San Francisco on October 12 that would be an amazing opportunity to attend. Daddy and I have discussed this and agree that attendance should be a high priority.....but only one of us could really attend since neither of us would get anything out of it if we took the kids. I'm trying to come to grips with being the one that needs to attend. I don't like driving in San Francisco, at all. I think the conference itself is actually in Palo Alto, so I may be able to avoid San Fran, but still, I'm scared. I'm scared of a lot factors surrounding the conference. There is no doubt in my mind that I will cry, I do not like to cry, I really do not like to cry in front of people, I really, really do not like to cry in front of strangers. I do not like crowds. I do not like being away from my kiddos. I do not like getting up early (the conference starts at 7:00, I would need to leave by 4, I would need to get up by 3). I'm not looking for excuses not to go. I know I will go, I have to go, this is a once in a (uncertain of the time frame) opportunity and I think the benefit would be huge for us, for how we work with and interact with Mr N.