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.