Snow, school, and speech

We have no snow, the forecast says snow, but the clouds say no snow. I'm hoping the forecast gets more accurate as the day progresses.

My last post I mentioned that Linda called to say that Mr N would be going to the local preschool starting January 7, I called and left a voicemail to the school psychologist to get more information. He called on Friday to let us know what was going on. He has proposed that Mr N attend the local preschool and have an aide that is with him all day, the school would supply a special room for his therapies (I'm assuming speech and OT). He only discussed the possibility of getting an aide with Linda. She must not have understood that this is only a possible scenario at this time. The school psychologist is meeting with the local preschool in a couple of weeks, then will discuss the possibility with the board. So we still don't know where he will go or when or what he will be doing. Good times.

Onto the speech portion of today's post...I still consider Mr N to be non-verbal. While he does have an expanding vocabulary, he can't say his name, he can't tell us what he wants and needs, he struggles to communicate in any way.

Yesterday he fell asleep at 6:30pm, I though he was down for the night, but he woke up at 8:30 in obvious pain and distress. Words can not express how incredibly heart breaking it is to not know what is wrong with him. The pained cries make me sad, they make me angry. It is so incredibly unfair that my child is unable to tell me what hurts. We spent an hour taking turns holding him, standing up with him, sitting down with him, laying down with him, going upstairs, going down stairs, watching movies, trying to play his iPad, rubbing his tummy, massaging his legs and feet, just trying to provide enough comfort to end his pain. We finally determined that it must be gas because he started burping and tooting then the crying let up.

It was an hour long ordeal, not that long in the grand scheme of things. But in that hour I pondered many times how it is possible for a mere human to endure watching a child struggle in pain and how long they can handle such torment. I said to Daddy "I wish I could take his pain away" in his exhausted state he thought I said "I wish I could give you his pain". I mean I would in a heartbeat, but I was selflessly offering to take the pain myself.

I would love to be able to give my son the gift of speech, I would love to hear him tell imaginative stories like his sister. I would love to hear him jabber on and on about something I don't care about. I am quite proud of his accomplishments and progress, I just wish that talking wasn't so much work for him.

Once we got him calmed down after his rough waking, we turned in for the night, only he wasn't tired after his two hour nap. E fell asleep first, Mr N sweetly stroked her arm, kissed her cheek and pulled the blankets over her. Daddy fell asleep next, which left me to keep Mr N quiet. Then came a moment of excitement and joy, Mr N sneezed.  Mr N said "sorry". Unprompted, completely on his own said sorry. Those small things give me hope, give me joy, give me happiness. He said sorry for sneezing. It is brag worthy.

The spontaneous, unprompted, non-echolalia speech is the best. I feel like it's progress it is a tiny step in the right direction. He did another this morning, he brought me something and said "here". We've been working to get him to say "I want" or "I need" when he wants something. This has resulted in him bringing one of us the hotdogs and him saying "I need" I don't know if he gets it or if he is labeling them "I need". Sigh.

We are still working on counting, I'd like to hear him count to ten without help. Right now I have him watching Baby Einstein Numbers Nursery while I work on my blog. They count various objects several times throughout the movie. They were counting train cars, there were 5 of them. They said "one", "two" and then Mr N said "three" "four" before they did. I do think he is understanding the concept of counting. Once the movie is over I'll write down numbers and see if he recognizes numbers. He has a few counting games on his iPad, too, that I'm hoping to play with him today.

What the hello kitty?

We had Mr N's IEP 2 weeks ago today, when we left the IEP the decision was that Mr N would go to the structured preschool in Soulsbyville and they would arrange for us to observe a couple of times before he started.

We have heard absolutely nothing from the school. Yesterday Linda, the coordinator called and said that the school decided that Mr N would go to our local Parent Preschool and Katy would be his aide.

I honestly don't know what to think. Not spending close to 2 hours a day driving is appealing, but the communication from everyone has been shoddy at best. Seriously? When were they planning on telling us?

I have a few reservations about the local preschool, but I would definitely like to observe before we decide. I'm not sure how I feel about sending my kid(s) to a school that random people in town have told me to avoid at all costs. What kind of reputation does it have that at least 3 people have told me not to send my kids there? That is not encouraging. I'm a little apprehensive to begin with, but I would feel better knowing that Katy was there keeping an eye on him. I trust that she will be honest with me about the school.

I'm hoping that the school district contacts me soon and has a plan to ensure he receives speech and OT. These are necessary therapies he needs.

I'm happy that Daddy will be off of work Monday and Tuesday, but really wish we had plans to utilize the long weekend. I'd love to go on a mini-vacation or at least have some fun planned.

I often wonder how much of Mr N's talking is just echolalia, he has been doing a ton of it lately. He repeats a ton, from sissy, from daddy, from me, even from watching movies, he will repeat. Last night when I was tucking him in I said "I love you" expecting the typical "I love you" back but instead he said "I love you, too". I am really hoping he is getting it, that he understands what he is saying.

Honey

Mr N has been calling me "honey" all day, I correct him each time, but it is super cute. I frequently call him and Daddy "honey". He called Daddy "honey", too. I touched my chest and said "mama" then his chest and said "baby" to explain that is what he should call me. He then started calling himself "mama". The little stinker was totally playing me.

Since Mr N hasn't had therapy, I've been working with him on counting, colors, letters, etc. He has started counting things on his own, without prompting. The highest he has counted without prompting is seven. My joy in unimaginable. I'd been hoping that they would teach him these necessary things during therapy, but it wasn't a priority. I'm so excited. I am going to keep working on counting and colors until he has them mastered. He correctly identified 3 colors today, but I'm not sure if it was just luck, so we will keep at it.

We also worked on shapes today, but he wasn't as interested in them so we kept it short. He did some music and dancing but he was super sleepy so he didn't do any actions along with the songs. I'll try to do music earlier in the day tomorrow. He wanted to do number flash cards but he wasn't being appropriate with them so they didn't last long. E on the other hand did her number flash cards up to 25. I wish I had some word flash cards for her, until we get some we will just use books and the sight words app on her iPad.

E loves dancing, so music time was her favorite today. Unfortunately she insists that I dance with her and it wears me out. The CD we have has 25 songs on it, that is a lot of dancing. She also insists that we dance with her along with the songs on Barbie Princess and the Popstar. Daddy is always roped into dancing with her. E has also picked up the witty phrase "this is wrong on so many levels". It happens to be so much cuter when she says it than the dog in the movie.

E's obsession with cats has not waned. She asked again tonight if we could get a new cat and name it Milo. Daddy told her she could just rename Elephant, but she has already renamed Elephant "Stripes". She has insisted on downloading Littlest Pet Shop on Mr N's iPad so that she can play on both of them.

I'm so incredibly happy that Mr N is still progressing verbally, he is learning even without a qualified teacher. He is even speaking in full sentences at times. We've been working on getting him to say "I want" and "I need" before requesting something. For example "I want milk" instead of just saying "milk".

Friday

We got up early Friday morning to head to Sacramento for Mr N's endocrinologist appointment. Along the way Daddy reiterated to Mr N several times that we were going to the doctor but there would be no "ouchies" involved. We gave ourselves plenty of time for traveling to allow for any unexpected stops.

I checked Facebook to see what all of my friends were up to and was shocked to learn of the shooting in Connecticut. The rest of the trip I kept reading news articles and keeping Daddy up to date with what was happening. While we were in the waiting room they released the information that 20 children were dead along with 8 adults. Unbelievable.

We got called back into the exam room and waited for the doctor. Mr N was not very content to sit and wait, despite the super fun toys that I had in my purse for him. The nurse tried to bribe him with stickers but he just threw them on the floor. Once the doctor came in he introduced himself and said he'd do the physical exam then send one parent out with Mr N so the other could stay and discuss the results of the exam and the blood work that came in.

The exam only took a couple of minutes, Daddy then whisked Mr N out of the room while E and I awaited the news. While Mr N's TSH levels are low his thyroid is not swollen and his free T4 and his t3 levels are normal. At this point there will be no treatment and no diagnosis other than "abnormal" TSH. We were quite relieved and excited to find out that one health problem has been taken off of the table for now.

We also received the lab work back indicating his hemoglobin has raised from 6.5 to 8.1 so it is rising, thankfully this has all been done with changing his diet. I couldn't even bring myself to post the news of Mr N's blood tests on Facebook after the tragedy in Newtown, CT. How could I possibly share good news or be happy when so many children just lost their lives?

We departed Sacramento to being our journey home, we stopped for lunch and both kids ate quite well. Mr N must have been hungry because he couldn't wait for his food to cool off before digging in. He ate all of his and some of sissy's.

We arrived home and followed the coverage of the news regarding the tragedy in Connecticut. How could someone slaughter children? How am I supposed to send my baby to a public school? The very first thing that bothered me when I went to the school for the initial evaluation was that there was absolutely no security in place. I walked past the gym, several classrooms and right into the preschool room. How is that ok? How is that supposed to make me feel safe enrolling him into school?

I realize that the chance of being in a mass shooting is less likely than being struck by lightening, but don't we take precautions to avoid being struck by lightening? Don't we avoid playing in thunderstorms? Don't we take every precaution to avoid premature death?

The shooting at the Sandy Hook elementary school shook me to my very core, these are children quite close to my children's ages, my nephews and nieces ages, my friends' kid's ages, etc. How can we protect our kids?

As the news reports came out there were cries for tighter security, armed guards at the school, banning of firearms and ammunition. But none of those things caused Adam Lanza to kill those children. He didn't kill those babies because of lax security, he didn't kill those children because there wasn't a security guard, he didn't kill them because he had a gun. He was severely mentally ill.

The speculation that Adam Lanza had autism was like a punch to the stomach. Autism did not make Adam Lanza kill. I have yet to read any official diagnosis, but it doesn't stop family, friends, neighbors, newscasters from speculation. They did the same with James Holmes. Autism has enough stigma as it is, these children suffer enough as it is, they don't fit in well with their peers, they struggle all their lives, now they are also known as ticking time bombs just ready to go on a mass killing spree. Exactly what every parent with a child that has Autism does not need, what every person with autism does not need.

Wild speculation rarely benefits anyone. I really wish that people could focus on facts rather than assumption and fear.

While reading about Adam Lanza and the shooting I came across a mother whose son has severe mental issues. I can't imagine being in her shoes and hope that I'll never know the fear and pain she endures trying to raise her beloved son. Here is her blog, it is worth a read. http://anarchistsoccermom.blogspot.com/

Mass shootings always elicit blame, fear and panic. Everyone agrees something has to change to prevent these tragedies from occurring. Banning guns will not prevent massacres. Armed security guards will not prevent massacres. Locking up autistic children will not prevent massacres. Only God has the ability to stop the senseless killing, and he will. The Bible promises a time when death, pain and suffering will be no more. It is impossible for God to lie, he will follow through with his promises. He will rid the earth of evil.

Until evil is removed from the earth, we (humankind) have the moral obligation to assist those who are weak. These mentally ill individuals need help, they need treatment, and they need to be protected.

I would be remiss to not mention the precious children in China who were attacked by a knife wielding man. While there was no loss of life, those children will likely suffer for years from the brutal attack. Twenty-two children slashed and sliced by another mentally unstable individual. They will carry emotional and physical scars for the rest of their lives. My heart goes out to those precious littles and hope they have the support they need to begin the recovery process.

It absolutely terrifies me when autism is blamed for killing. There is such a misconception about autism, there have been countless parents who kill their autistic children out of fear for their future and that of the child. Stephanie Rochester killed her 6 month old because she was afraid he had autism. He was six months old.

This tragedy has prompted more hugs for my kids, possibly to the point of annoyance as E said Friday night "one hug at a time, mom". Parents everywhere were giving extra hugs and snuggles, ever aware of how precious our children's lives are and how quickly it all can change.

Saturday we took a break from the media and social networking, we got some stuff done around the house and Daddy didn't even complain when I wanted to rearrange the living room. Three times. He's such a good sport.

Blood Draws

This morning I took Mr N in for a blood draw, we need his thyroid and iron levels retested. He has an endocronologist appointment on Friday and I'm sure they'd like to view the results before we get there. We no longer will be receiving in-home therapy since Mr N is three now and should begin transitioning into preschool. Thankfully Katy told me last night, since they didn't mention it to us at the IEP.

We dropped sissy off at work with Daddy while Mr N and I headed to get his blood draw done. Mr N realized what was going on as soon as we pulled out of the parking lot, he cried most of the way to the doctor's office. I got him to stop crying right before we arrived at the doctor's office, we went inside then as his fear and anxiety grew the crying began again. We got checked in then sat in the waiting room creating a scene for about 5 minutes before we were called back for the dreaded affair.

One of the nurses from the front desk assisted in holding Mr N down with me while the lab technician drew the blood. Mr N was very upset, he was much more visibly upset than at his last blood draw and he fought a lot harder. Since this was his second blood draw, he knew what was happening and was already completely worked up before they stuck him with the needle.

I think Mr N blamed me directly for the entire dreaded event, as soon as we got outside he asked for Daddy. I asked him if he wanted to go to work with Daddy for a while and he said yes. He wouldn't let me put him in his carseat until I told him I'd take him to Daddy, then he started calming down. I dropped him off with Daddy and picked up E so we could run to the store for a few things.

While at the store we picked up some Reese's Peanut Buttercups as they are the cure all for blood draws. Then we picked Mr N back up from Daddy, he seemed happy to see me, but was still favoring his poked arm. He napped on the way home after indulging in some peanut butter chocolatey goodness. He was in a much better mood when he woke up at home, he's still favoring his arm but has clearly forgiven me.

Darling Husband

I've been an emotional wreck since Friday, trying to figure out some other plan, something I can handle, with no success.

Saturday we had our assembly and Daddy was sweet enough to accompany me to assist with the kiddos. I'm incredibly grateful with how helpful he is, how much he assists so that I can listen and take notes. He's amazeballs. Afterwards we stopped and rented a couple of movies to wind down the evening.

This morning we started off with some yard work, hit the shooting area, then headed for the hiking trails. I've been itching to get back to Carlon Falls to get some pictures and to get some better shots of the falls at Rainbow Pools. My darling husband didn't hesitate to agree to hiking the 3 miles to the falls for some pictures. The forecast for today was 60 and sunny, we figured it'd be cool on the hike due to the shade and cold river flowing by. It was about 47 degrees where we parked and began our hike, both kids started off wanting to be carried. When I stopped to take a picture Mr N decided he wanted to walk for a while. Unfortunately, we started running out of sunlight so Daddy offered to catch up with the kids while I went ahead to get shots of the falls. On my way back to meet up with Daddy I took the high path and somehow missed them. After making it back about 3/4 of a mile I realized I must have missed them. I ran back to the falls and found them.

Thoroughly exhausted we headed back to the parking lot, along the way Daddy noticed he lost his sunglasses, so again we retraced our steps until we located them, then resumed our journey toward the parking lot.

Here are some pics from today:

Defeat (IEP Format)

We just got home from the dreaded IEP. I feel so defeated, so emotionally exhausted, so incredibly overwhelmed. I totally lost it about two hours into the IEP and ran crying from the room, guess I should have put my big girl panties on this morning. I can't even look at Mr N without crying, he is my baby.

The recommendation is 25 hours a week in a structured pre-school, that is 50 minutes away from our house, busing is offered, but we can drive him if we want (we want). This would also include 20 minutes twice a week of speech therapy and 30 minutes of occupational therapy twice a week.

I don't even know how to wrap my head around all of this, sure I knew this was probably going to happen, but in the last week two people had asked if we'd prefer in-home services. I guess I thought it was an option, or at least a possibility.

Don't get me wrong, I do think a structured pre-school where Mr N could get the social interaction that he so desperately needs, along with speech and OT would be very beneficial to him. But he's my baby, the idea of dropping him off at school and walking away feels like abandonment, feels like a knife in my heart. He is so little, he loves me, he needs me. Rationally I know he will do fine, I know he will cry less than me. But will it effect our relationship? Will he slowly drift away? Bonding was not easy to start with, will we lose our close bond? I worked so hard to make that bond, I can't lose that.

I feel like venturing down this path would require also putting E into pre-school, which she would absolutely love. She would thrive in preschool. She would be so jealous if Mr N got to go to school and she didn't.

Where does that leave me? I'm a stay at home MOM, emphasis on mom, not a stay at home pet owner (I don't even like the cat that much). Where do I go from here? Do I take the plunge and put them both in pre-school? Will that school even accept E? Will I have to find a school at a different location for E? Will I spend my days doing pick ups and drop offs?

I want to wake up and have my little boy cured of this cruel disorder. Until then I guess I do what I must to help him, but not without tears. Before we even made it across town to the store Daddy suggested we pick up a few things they suggested that will help Mr N in his growth and progress over the upcoming months. I was still focused on making the tears fall, he was busy planning on how to help Mr N more at home. I love that man.

I am going to spend some quality time with my vodka now.

Zippers

Among the countless goals that Mr N has, is zippers, buttons, and snaps. Tuesday during therapy he was shown how to unzip the monster truck case. Here is a pic so you have a better idea on the size of the zipper.

It's a pretty small zipper with a pretty small clasp, but by yesterday he had it mastered. He unzipped the entire thing by himself without assistance. Pretty exciting stuff going on up in here.

I'm still quite anxious for him to learn to count, say his ABCs, identify his colors and shapes. Am I expecting too much? I've mentioned it a few times along the way in this whole journey. The most recent time I mentioned it to Mr N's coordinator, she said "he's smart, it'll come, he just needs to learn to sit at a table first". Uh, huh? How does that teach him? E knows all of that and I've never had her sit at a table for long periods of time. She does sit and do her school work, but typically in 15-20 minute increments. Mr N will work at the table with play doh, puzzles, painting, trains, cars, etc for 15-20 minutes at a time. How does that not count?

I talked with Katy yesterday about what the coordinator is wanting Mr N to do, she said they want him to sit at the table for 45 minute sessions. I'm having a really hard time getting on the same page as the coordinator and the school, especially after reading books from professionals, after attending a conference presented by professionals. I do not think that all learning has to be done at a table. I worked in a kindergarten room assisting children with special needs, they certainly did not ever sit at a table for 45 minutes at a time.

Frustrated much? Ugh

Uncertainty

I apologize for the lack of updates lately, I've been so stressed, uneasy, and emotional over Mr N's future, I worry that I won't be able to keep my post sounding logical.

Yesterday, the school special education teacher came to observe therapy to get more data for the IEP on Friday.  Mr N did great, he even did all of the actions to "I wanna be a dog" and played ring-around-the-Rosie quite gracefully and said the words as best he could. Before she left she asked what we were wanting as far as services, I again expressed the need for speech therapy and OT. She asked if we wanted in-home services or preschool. I was a bit surprised, because I wasn't aware that the choice was ours. I would prefer in- home services for Mr N.

Today, the coordinator was here and stressed the need to have a structured schedule for therapy. She wants us to start using a timer and the PECS board to show Mr N what is happening next, then use the timer to give 10, 5, and 2 minute warnings before moving to the next activity. I'm not sure how to feel about it all. I do think that his therapy should be more structured but I think it would be hard for the current therapist to enforce that. I really like Katy, but it doesn't seem like she is in charge when dealing with Mr N. Before the coordinator left she asked what kind of services we were hoping for, again I reiterated our desire for in-home services.

I don't really know what to think, I'm not ready for my little boy to go off to school by himself, I want him home with me. I want to help him learn and grow, I want to be the one to kiss his boo boos and give him cuddles. I want to know how better to help him. I don't know if in home services are actually an option or if they are just toying with me. I'm dreading the IEP on Friday, but want so much for it to be done and over with.

Last night I took the kids to a friend's house for a clothing swap, I was pleasantly surprised that Mr N was completely appropriate the entire time. He played with his sister and other kids. He even patted the baby I was holding on the back. He usually isn't too excited about babies.

Therapy was pretty rough today, the drastic change was hard for Mr N to handle and resulted in meltdowns about every 10 minutes. He is doing fine now, mommy hasn't recuperated. I understand what they are trying to do, I know what they are trying to accomplish, but for what? I feel like the therapy is soley focused in getting him ready for preschool. It's like each step of the way they focus on preparing him for the next step, but show no regard to teaching him life skills.

I feel like the stress of it all makes it hard to focus and make sound decisions in other aspects of my life. All of my energy and efforts are focused on getting Mr N the best help and questioning if that is even possible. He is so precious to me, how could I fail him?

On a bright note, Mr N is talking so much more that even the coordinator commented on how much more verbal he is than he was two weeks ago when she was here. Once again sissy is the best thing Mr N has to play with. He repeats what she says, he copies her actions, he imitates her all the time. She frequently says "stop repeating everything I say". I just smile and feel a sense of happiness knowing that he is learning so much from her.

The cat still poops. Ugh

Well Child Check

Friday morning we got up early and headed to Modesto for both kids' well child checks. Walking into the building initiated operation meltdown mode for Mr N, it was quite expected for us and quite shocking to the staff. I think next visit I will over ensure that everyone is aware of his diagnosis and his extreme displeasure with their office. He hates the doctor's office.

Mr N is in the 75th percentile for weight and height, E is in the 50th percentile for height and almost to the 10th percentile for weight. Both are looking good. Mr N was supposed to have a blood draw to check his iron levels and to check on his thyroid levels, but the lab lady wasn't in so we will be heading back down next week.

I've been really working on trying to get Mr N to enunciate better, his words all are pretty flat and not well enunciated. Tonight I said "I love you" and over pronounced it to see if I could get him to say it better. He said "you" very clearly, said "love" slightly better than usual and said "I" much better, too. It is progress. Sometimes it works sometimes he doesn't care.

We have had rain for the last several days, so we haven't done a whole lot. We rented some movies and played some CandyLand. Mr N enjoyed dancing to some of the songs on Barbie Princess and the Popstar, I joined him. E was not impressed by our dancing, she assured me that princesses do not dance that way. She is not wrong.

Mr N has really started enjoying his swing, he likes to spin in it and will do so for several minutes. He then enjoys trying to see how far he can walk without falling over once he gets out while still dizzy. His jumping on the trampoline has vastly improved, he no longer has one stiff leg when he jumps.

Today E was being cranky with her brother (well, really she was being a pill most of the morning into early afternoon) and accused him of thinking he was a girl, I told her maybe he is a girl and she is a boy. She kindly pointed out that was impossible because she likes hearts and flowers, which obviously are the only indicators of gender.

EEG Results

After several weeks of waiting, Daddy decided we needed to call and get the results of the EEG. I was content with pretending they didn't exist. I called this morning and began the agonizing waiting for a return call, only to find out a few hours later that the results came back normal. I love getting good news. Now I'd like some more, please.

Katy was sick yesterday so today was our first day back into therapy after the holiday weekend. Mr N was excited to see Katy and even gave her some hugs.

Mr N did pretty good during therapy today, it was only 2 hours long since we had a meeting at the school that interfered with therapy. Since it was a cold, rainy day and shortened we let the kids watch a movie so that Katy could see how much Mr N repeated things from the movie. She got to see him sing along, repeat lines and say cute things from Phineas and Ferb.

The meeting with the school was unsuccessful. Mr N fell asleep on our way there and slept for the first 30 minutes while mommy answered a slew of questions. My witty responses brought me commendation on my amazing sense of humor. I am funny, there is no denying.

When Mr N woke up he was not so thrilled about being in a strange place with strange people looking at him and trying to engage him. Soon the room was filled with cries and screams despite my best efforts to convince him that it would be fun. E took advantage of the situation and played with all sorts of toys and explored the room, it was a kindergarten room so it had lots of fun stuff.  I finally took Mr N outside in the pouring rain to calm him down, the psychologist accompanied me to try to obtain more information and to try to get Mr N to respond. It took about ten minutes to get Mr N calmed down then we headed back inside. This did not bode well so we headed to the car with the entire evaluation team in tow. We buckled Mr N into his carseat and he calmed right down, accepted the toy he was offered and began interacting with the speech pathologist. They took turns trying to get him to do things. He did do some talking, high fives, and fist bumps but they didnt get enough results to finish the report. They will come next Wednesday during therapy to observe him.

His IEP that was scheduled for this Friday is rescheduled for next Friday, so that they can finish up the report before the IEP. The entire process is so incredibly stressful.

Party time

We were invited to a Disney themed party this evening, most of the kids (and some of the adults) dressed as Disney characters. It was complete with music, pizza, musical chairs and a costume contest. Daddy isn't back from his weekend trip yet, so I was flying solo with the kids. I knew E would absolutely love it, two of her favorite friends were hosting the party and so I wanted Mr N to have fun so we wouldn't have to leave early.

We were among the first to arrive, I was hoping getting there early the people would gradually arrive and not be so overwhelming. Mr N started playing with the balls and balloons and checking out the food tables. It took some redirecting to prevent him from touching all the caramel apples, the cake and trying to pry into the pizza boxes. As more people arrived Mr N lost interest in the food and was more interested in wandering around. Of course, by the time we started eating, he no longer cared about the food and didn't eat anything

Neither of the kids fully understood the strategy to musical chairs. Mr N didn't play the first round but hopped in a chair when the music started and successfully swiped someone's seat. I was pretty proud of him, even though he made a six year old cry. Next round he decided he'd prefer to be in charge and directed the other children to walk in circles around the chairs. Every few rounds he snagged a seat for himself, it was pretty cute. It wasn't a super competitive game and it was mostly chaos until the last few rounds, by that time most of the younger kids were just in and out of the game.

The party lasted until 7pm but we departed about 6, since both kids were tired and ready to go home. Mr N did surprisingly well with all the people and noise, I was so proud of him. He really has made such a drastic change in the last several months. I love that little man to the ends of the earth, I can't imagine my life without him.

Daddy is on his way home now, I'd guess he's about an hour out still. Unfortunately, he ran into a lot of traffic and didn't arrive home 4 hours ago like we expected. We must figure out a better alternative for these type of situations so he's not spending an extra 5 hours on the road. The kids are super excited to see him and are running circles in the house. Last night E told me that she has been watching out the windows every night waiting for Daddy to get home, even though we told her he wouldn't be home until Sunday night.

Kindness & Randomness

It brings a smile to my face and a tear to my eye when one of my friends or a member of my family posts, emails, texts or calls me about something pertaining Autism. It is truly touching to know that so many people care and take the time to let me know what they've read.

Last night as I was laying in bed I started thinking about how my littles are so incredible. I am so truly blessed to have been entrusted with their care, I can't imagine two better children to have in my life.

Yesterday E and I made sugar cookies with frosting and sprinkles. She loves baking and helping me cook, as does Mr N. We spent the last few days eating cookies, playing Candy Land and watching movies.

Today we went for a little drive just to get out of the house and see if there was any snow up high. There wasn't any at 5000 ft, but we did see some at the higher elevations. Hopefully soon there will be a beautiful blanket of snow down lower.

Peer play

One of the things that needs to be done before Mr N's exit evaluation for Early Start, is a peer play date. They need to observe Mr N playing with a non-sibling peer, we had one scheduled for last week but we were sick all week promting us to cancel. I tried to get one scheduled for today but no one was available.  Next Tuesday will hopefully work out for everyone. Then Wednesday I have a meeting with the school regarding something I don't recall (and I'm too lazy to look at the calendar), Friday the kids have well child checks followed by Mr N's IEP at the school.

Next week is shaping up to be a very busy week which will complement this busy week nicely.

Mr N did really well doing some imaginative play during therapy today, he has recently become attached to a little teddy bear that he calls "baby". He laid it down for a nap in the dollhouse and gave it a pacifier. It was pretty cute.

Mr N's eating has progressed, he is eating more variety and larger portions, so I'm relieved to see that progress.  On Saturday, the hungry hungry hippo ate 7 hotdogs,  just to show Daddy how real men eat.

Both kids are curled up on the couch with me, E is napping and Mr N is watching a movie. They both needed some Mommy time since I spent most of the day painting the kitchen and the bathroom. Mommy needs some cuddles, too. They make my day better.

Down with the sickness

Last Saturday E came down with a cough and began complaining of her throat hurting, while we were out enjoying the first snowfall of the year. We started the day off playing outside in the snow. Here are some pictures from our yard.

Then we warmed up and decided to go check out some of our favorite sites to see how they looked covered in snow. This is just a few miles from home, when we first arrived there was a little low lying fog which quickly took over the entire valley, then started lifting.

We headed home to warm up after our little drive. Then later in the afternoon we headed to Yosemite Valley to see some more awesomeness.

We headed home in time to catch the sun setting.

By Sunday morning all of us were under the weather with sore throats, coughing, sneezing, and drippy noses. That pretty much sums up our entire week, we didn't have therapy at all last week. Daddy and both kids are feeling much better, so we will resume therapy tomorrow. I'm still not feeling better, but surely by tomorrow I'll be well enough and hopefully not contagious. I plan to supply plenty of hand sanitizer for Katy.

Yesterday Mr N woke up a Daddy's boy which entailed tons of cuddling and hugging for Daddy. Daddy was quite happy to provide the hugs and cuddles from the usual Mommy's boy. I'm so happy to have such a wonderful husband and father for my children.

Words words words

With Mr N's quarterly review coming up we are studiously trying to record all of his words. His goal for this quarter is 50 words. I started recording them Tuesday, he is up to 44. I'd really like him to meet this goal. Since I've been keeping track, I've noticed that he is doing a lot more echolalia. It's hard to know what is good, what is bad, and what should be encouraged versus discouraged. While reading "Thinking in Pictures" by Temple Grandin I came across her opinion on echolalia. She indicated that children do echolalia to practice saying the word and to hear what it sounds like coming out of their mouth.

I've quite decided that I will not discourage echolalia. I've noticed the more Mr N does it the better he gets at pronouncing words correctly.

Yesterday Mr N did pretty good during therapy. He did do receptive color matching, but I don't feel like he really understands that red is red. I think we have a lot more work ahead of us to get to where I'm comfortable saying he knows his colors. I'm confident he can distinguish between colors, he can color sort them quite easily, but I don't think he understands that each of them have a different name and which is which.

I'm sure it is human nature, or at least maternal instincts that make me want to get the training and education to be able to teach him everything, to understand how to train him to speak, and fulfill his sensory needs. It is so bothersome that I don't have the skills needed to teach him everything. It is so frustrating that he talks and I can encourage him to talk, but how do I correct his manner of speech?

Sometimes I start to get hopeful when I tell people that Mr N's speech is at about a 12-13 month old level and they assure me that their child who is 18-24 months doesn't talk as well as Mr N. I start to think, wow maybe he is really catching up, then I spend a few minutes with Mr N and back to reality, he is quite legitametly at the 12-13 month old level in speech. I never know if I should tell people that they should have their child's speech evaluated when they say Mr N speaks better or just let it be. Talking to my sister-in-law who has a 2 year old always assures me that Mr N is, in fact, delayed. My niece always wants to talk to me, hearing her sweet little voice say "hi auntie, how are you?" is really all I need. Her speech and vocabulary is expanding on track and quite rapidly much like E's did at that age. Oh how I wish Mr N would increase his vocabulary as rapidly as my niece, how I wish he spoke as well, with as much inflection and enunciated as well, but alas, this battle is mine, we will conquer this delay.

Yesterday after therapy ended we loaded the car and headed south, Daddy has a meeting today in Irvine so we made the drive down with him, for a little change in routine. The trip down was relaxing, it gave Daddy and I a chance to talk and spend some time together. We got checked into our hote,l and let me just say, this is the coolest hotel room I've ever stayed in. It is quite large and has a nice size sitting area, office area, plus a spacious sleeping area with a split bath and walk in closet, it is complete with a microwave, fridge and storage space for our food. The airport is quite close by so the kids have enjoyed watching arrivals as they descend towards the hotel.

This morning Daddy headed to work, while the kids and I scouted out the nearest Target to obtain drinks, snacks and some much needed long sleeve shirts for E. I'm not sure how I failed to purchase her warmer clothes prior to now, but I did. We have a chance for snow in the forecast at home, so we need to be prepared with warm clothes!

Of course, since we don't have TV at home the kids think staying in a hotel is the bees knees since they get to watch TV shows that they have never seen before. We also had the opportunity to see a rare taxi this morning, E was quite impressed at the sight of the taxi and announced quite excitedly "look! there is a taxi! I didn't know we had taxis here....here on planet earth!". Indeed we do, indeed we do.

Tomorrow we head back home, we intend to stop and visit my cousin on our way through her town.

Life's a Dance

Life has a funny way of working things out. It seems some days our life is full of worry, concern, and pain; other days it gets balanced back out by amazing opportunities that are extended our way. While I'm a firm believer in working hard for what you want, there are times when all that hard work is noticed and rewards are forthcoming.

I know my last few posts have been full of emotion, pain and stress but that is also part of our life. I try to keep a balanced view and not let the dark days get too dark. Dealing with the worry and heartbreak of having a child with special needs can be overwhelming and even all consuming if we allow it. But I try very hard to focus on the positive as well, we live in a beautiful area, I have an amazing husband with two gorgeous children, and we are all in good health. We are blessed with the ability to spend a lot of time outdoors enjoying Jehovah's wondrous creation.

Yesterday Mr N had a good day in therapy, he did an awesome job putting together the alphabet puzzle and even saying some of the letters. Every bit of progress makes my heart leap, I am incredibly proud of my little guy. The amount of effort he puts forth in order to say words is astounding, but he doesn't give up and neither do we. More work equals more rewards.

Today we meet with the school district for the first time. I'm quite nervous and just want it to be over, but it's not until this afternoon. I'm also hoping to squeeze in a play date today for the kids.

We met the new coordinator today, the old one is moving onto another position with a new company. The new coordinator is very nice, she engaged Mr N and tried to get him to receptively identify colors without success, but he was friendly with her.

The Weekend

Saturday morning Mr N woke up at 2:30am and started tugging at the nodules. He would not go back to sleep, so I got up with him and kept him from picking at his head.

We left for Sacramento at 5:00am to get his nodules removed, he fell asleep on the way up, so at least he got a little more sleep. Once we arrived at the hospital he did not want to go in, it took a lot of convincing from Daddy to get him inside. While we were waiting, he took laps through the hallways until they were ready to remove his nodules.

It didn't take too long to get all of the nodules removed, she cleaned up his head the best she could, but there was still some glue left on his head when she was done. He didn't scream and cry quite as desperately as he did on Friday, so that was a bit of a relief for Mommy and Daddy.

After departing the hospital we headed towards home, but not before hitting up Costco & Walmart for some much needed groceries. Then we headed home to do some relaxing. Daddy, of course, doesn't know how to relax and he did some work around the house while I napped happily on the sofa.

Sunday morning we headed to meeting but ended up having to sit in the back room because we were late. Mr N does not enjoy sitting in the back room, and until yesterday I couldn't figure out why. The first 20 minutes I stood at the back of the hall holding Mr N to keep him happy. While standing there I got to thinking and wondered if the speakers in the back room were creating too much echo. I decided to turn it off to see what happened, he was fine after that. I can't believe I hadn't thought of that before.

After much convincing I talked E into giving a comment during meeting, she hasn't done it in quite a long time because she is too scared. She finally agreed to giving it a try, and she did great. Afterward she said "that wasn't scary at all, can I answer at the next meeting?". I'm so proud of my little girl, she is growing up and getting brave and trying things she's scared to do. She immediately told Daddy when we came home, she was so proud of herself.

Sunday evening we had a few friends over, built a bonfire, then roasted weenies, marshmallows and had a great time. Mr N ate 3 hot dogs before anyone arrived then ate another 1 1/2 hotdogs once they arrived. I was pretty impressed by his eating. E, on the other hand, was all about the pumpkin bread. I'm pretty sure she ate more than anyone else. Hopefully today we can get some more pumpkin bread made since I only used half the pumpkin in the first two loaves that I baked. Then I'm going to try to puree up some spinach into brownies in hopes that Mr N will eat them.

Yesterday, today and tomorrow

Yesterday....
Daddy woke up not feeling well and spent the day working from home. Since Daddy was home I took advantage and took E to town for some mommy and daughter bonding time. We mostly went so we could get supplies to do a project from her High Five magazine.

We made several stops and had lunch together before heading home to do Art 101. It was kind of a messy art project. We tore wrapping paper into small pieces and adhered them to a clipboard. I'm not sure how practical of an idea it is, since it is impossible to make them all smooth, but that is hardly the point. E had a lot of fun and we will soon do the other side since it took forever to dry.

E and I cut up the pumpkin we picked up and put it in the oven to bake. We ran out of time to make pumpkin bread but it is on the agenda for today. She has not stopped asking to make it.



Today....
Mr N's EEG was scheduled for 10am this morning so we woke up the kiddos bright and early this morning for a 7am departure. Mr N was less than thrilled about being woken up and dressed so early. E handled the rude awakening a little better than he did but she did complain about wanting to stay in bed.

We arrived at the hospital about 40 minutes early, I went in and got him checked in while Daddy hung out in the car with the kids. Mr N is not a huge fan of waiting rooms and he typically starts into meltdown mode while waiting. This waiting room had a huge doll house so we took him in about 25 minutes prior to his appointment so he could play. Both of the kids loved the doll house and other available toys.

While waiting we could hear crying, which incidentally sounded like kittens meowing, as I was already nervous I just pretended they were indeed kittens and not a scared baby. I talked to another daddy in the hallway as I could hear his child screaming. He said his son is 4 and was getting the nodules removed and that it was about 10 times better than getting them attached. Things were looking progressively worse for my little boy.

They finally called us back to the torture room and Mr N was fine as long as he sat in one of the non-patient chairs. Once we laid him on the bed it was all over but the cryjng. It took about 45 minutes to attach all the nodules, she had told us to expect an hour to an hour and a half so I guess we should be pleased that it was only 45 minutes. I laid on the bed with Mr N and cuddled him the best I could and held him still, wiping away tears from both our eyes. Once the nodules were all attached she began wrapping his head to prevent him from pulling off the nodules.

I was able to pick him up and hold him while she finished hooking up and packing the reader and getting it tucked away into a mini backpack. He was still crying and trying to leave but he finally calmed down and laid his head on my chest. As much as I wanted to just hold him for hours I had to put him in his carseat so we could head home.  He calmed right down in the car and didn't pick at his head at all on the way home. I'm so proud of my brave little man. Thankfully Daddy kept a brave face and was once again my rock to lean on. I know it is not any easier for him than it is for me, he is just better at not letting the tears flow.

Mr N fell asleep about 30 minutes before we got home so now I am cuddling my precious baby and hoping he forgives me for today. We have to journal what he does today so they can have an idea if what he is doing while they read the EEG.

Tomorrow...

We head back to Sacramento for an 8:00 am appointment to have the nodules removed. It should only take fifteen minutes, so hopefully it is less stressful and tearful.

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.