asthma...i hate it!

I have asthma. Elijah has asthma. Sam has asthma. Because Sam was a preemie, he gets hit hard when the cold weather arrives. He is now on oral steroids and also albuterol breathing treatments. I swear the kid sounds like he is going to cough up a lung or some such organ. The steroids are not fun. They tend to make an already moody child, even more sensitive. I just boost my caffeine intake and smile and know that they (the drugs) are doing the work to help his lungs work the way they are supposed to. We might make it to school tomorrow if we are lucky.

feeling better...

Thank goodness, some weeks have passed and I am feeling better. Life was definitely rough there for awhile. The boys are both doing well, and I think we have some workable plans in place to help both of them.

Elijah is doing some good work controlling his anger. We are sending a journal back and forth for daily communication with Ms. Shannon and set some some reasonable goals for him to work towards. He is doing great! We also found out that he will be having his tonsils and adenoids out in December. Although he didn't like this bit of information one bit, he rallied when he found out that he would miss school for a week and also get to eat ice cream as much as he wanted. We will see how he feels as the day approaches.

Sam is filling his week with therapies and schoolwork. He is receiving 1 and 1/2 hours of OT a week, 1/2 hour of PT and some group speech(I have to find out about this though.) We have continued his social skills classes too and although he grumbles a bit, I think they are helping him to understand a bit more about how to get along well with others. His behavior still sometimes makes me shake my head though. It is as if he cannot control himself sometimes and makes some pretty poor choices. That is when I believe the ASD diagnosis. Will I ever just accept it though?

breaking down

I am in such a funk that I lose it if the wind blows the wrong direction. Today, while picking up the boys at school, I lost it. Crying in front of people that I wouldn't want to see me cry normally. I feel like I have lost all sense of reality, and I need someone to take over for me. How can I help the people that are depending on me if I can't help myself?

must get help

I need some help. Overwhelmed every day, I am just trying to stay afloat in this mix of life. I am not winning.

soccer no more

Sam has never really liked playing soccer. He has watched his brother play all kinds of sports through the years though. He has also seen that after playing said sport, he receives a trophy at the end of the season. That was enough motivation to try playing his first organized sport. In my book, he wins just for trying. It is so much for a kid with vision issues to try and watch a ball in play while 15 other kids are running around him. He just looks lost out there, but it does serve for some comic relief when he is a "wall" at goalie. Sadly, the trophy is not enough for him this year. We will re-examine the idea in the Spring when the season picks back up.

breaking all the rules

I hate it when it happens, breaking all of the rules that is. Lately it is happening more and more. That bothers me, but I can't seem to get out of this downhill spiral that I seem to be on. There are mom rules that everyone knows about. Sometimes they get broken or bent, but at least when you are trying your best, you can be a little forgiving to yourself. I am not feeling this way at all. I have been a monster to my kids, they are afraid of me at times. I can see it in their faces. Man, that hurts.

CRAZY...

Using spellcheck, this is what it said. SUSIE. Hmm, imagine that.

normal?

It is funny, I think, when you get an autism diagnosis. A person tends to lose perspective on the "normal" things in life. For example, sibling rivalry. Do the boys argue with each other about everything because they are brothers two years apart or is it more than that? Sam can string along lots of good days and then bam...the shit hits the fan. Anything and everything is a problem. I don't know anymore what is real. The thinking part of his brain is ALWAYS working. He takes our conversations and twists them just so.

Here is one...

S: Would you be sad if I died?
Me: Of course I would be. You are my heart and I can't even begin to think of my world without you in it.

Same conversation, weeks later and when he is angry...

Me: Sam, when we get home, you will need to go into your room and take a break. (After smacking his brother and slamming the car door so he couldn't climb into the car).
S: I hope I die when you are still alive so you will be sad and cry.

Okay does this need a response? I am speechless after one of these zingers and I don't know what to say. I know what I feel though. Helpless and oh so very sad. My heart aches when I hear these things. I know I should be able to detach from his words and just help him but I just can't sometimes. I worry that he does know what he is saying, and is trying to hurt me. My gosh though, he is only 6! What is he going to have to say when he is 16?

night and day

We had our first day of "I don't want to go to school today, the work is hard." Seriously, we heard that every day last year. Now let me say, I'm sure it is challenging for him at times. But I know too that we have some supports in place for him to not feel so overwhelmed. He has complained that when he asks Mrs. M for help, she says "Dahling, I know you can do this." (That statement said with a welsh accent, love it.) We snuggled for a while and then got up and went about our normal morning routine. He journaled and was drawing a picture of a 13 legged green monster when I left.

Karen (his teacher) stopped me to say that he is a changed child this year. Of course, I have been feeling this way myself, but I wanted to hear it from someone who deals with him in his school environment. She said he plays with many different people and is very social. My heart sings with this info. Sometimes it is the little things in life that can make you feel like dancing.

am I blue?

I try, I really do try to remain up about the state of my life these days. Sometimes, I just get down about how I feel there is no upwards movement. Really, I don't have room to complain. My kids are healthy and happy, we have food to eat and a roof over our heads. Something is missing though and I don't know what it is. How can I fix it if I don't know what is broken.

boys...

Elijah is a typical boy. He is tough, has a great group of friends and is heavily into sports. Sam on the other hand, has taken a slower path and also a "less typical", less traveled path into boyhood. He is a first grader now and becoming more swayed by funny boy things. He told me he saw a girls butt the other day. I wouldn't have thought that he knew the difference and why that would be funny, but they laughed about if for two days and it had to be a secret. He is making friends more easily, he doesn't seem as intimidated by large groups and he has become very independent. I am so happy that he thought a butt was funny.

On being important

When you have children, you cross paths with a variety of people. Some become your friends forever and some you have things in common with for just a time in your life. We met one such family this summer while Elijah played baseball. Lori, Pete, Nathaniel, Gabriel and Eliza were one such family. Nathaniel is 7, Gabriel is 5 and Eliza is 3. Lori died on Saturday. It just doesn't make sense to me. I hug me kids a little harder every day and thank G-d that we are healthy. I wish you Pete the strength and love from others that you will need to continue along the path that you and Lori started together. I am sorry for your loss.

First day and all of that important stuff

Last Wednesday was the first day of school for the boys. This is not the face we saw on the first day of Kindergarten, in fact it was quite the opposite. With tears streaming down his face(and mine) Sam informed me that "he hated school and was never going back." This is when I stepped and became a Kindergartener for the next five weeks. He adjusted fine it just took over a month to get there. His wonderful teacher Mrs. M had faith in him and even invited me to stay to help him adjust. He had a good year, grumbling throughout from time to time, but he did it.

Flash forward to First grade. I thought this one out. I knew a lot of things would be different and needed to plan ahead to make this a smooth ride for us all. Because our wonderful building had been outgrown with the addition of a seventh grade this year, we were moving into a swing space for at least two years while our permanent site is being renovated. The building is a former middle school, and it is HUGE! A little intimidating for this mom let alone the little people that will inhabit it for 30+ hours a week. During the summer, we did a couple of drive by's and arranged to visit the week before school started. We went every day for a week and just walked the halls, found bathrooms, the office and cafeteria, you know all of the important things. It felt great, I was getting very excited for the boys. The best part(according to a 6 and 8 year old)...lockers! The locks were removed and the children get to store their belongings in lockers. Who knew? Sam went to bed saying he couldn't wait until the next day so he could go see his locker. He wakes up in the morning talking about how he is going to go say hello to his locker. It(the locker) has become the reason why he absolutely LOVES school now. I don't know who this child is anymore.

My life

I haven't had a job in seven years. Well, I guess people would argue that staying home and raising your children is a job but, I mean a job outside of the house. I have a friend who told me about a position that would have been perfect for me. A part-time nine month contract doing what I love to do. I guess I really wanted it, because tonight she told me that it went to someone else. Damn. I have learned through parenting Sam that a lot of times things are bigger than you and you have to surrender them to the universe. I'm trying, I really am. Things have been so tight around here with my not working, we keep telling ourselves that "this is just temporary" but I am getting tired. Tomorrow is a new day, let's see what happens.

one step forward and two steps back...

Nobody get comfortable, this is going to be bumpy! Sam has had three absolutely wonderful days after having an absolutely horrible day on Saturday. I wish there was a way to predict when he is going to have a meltdown, then I would know how to prepare people for it when it happens. I'm frustrated because P feels totally inadequate when he goes off, so that leaves me to deal with him. I truly believe meltdowns in a child on the spectrum are like out of body experiences. You wouldn't even recognize Sam while he is in the midst of these anger fits, it is as if someone or something takes over and his face contorts and he says really bizarre things. He slammed a play cash register on P's body and then he bit her, all while she was trying to get up off the couch to hold his arms and escort him into his bedroom. Once there, he proceeded to throw things out of his room and down the hallway. At this point, Elijah calls me on my cellphone and tells me that "You need to come home, Sam is out of control." Okay, plan B, clearly I am not going to the grocery store. When everyone (Elijah and P(who was sobbing)) had calmed down, I told them they should go out for awhile and Sam would stay by himself in his room. He came out about 45 minutes after everyone had gone and told me how sorry he was for biting P. I suggested he draw/write a picture for her to tell her how he was feeling. Agreed, and then he and I sat on the couch and snuggled. Once P came home, they decided to have a "do over" day.

I feel like if I am not here to tame the beasts in my children then the day will end up in the toilet for one or all of the members of this family. It is exhausting being this mom.

Now the good thing are that this kid over the last few days has really wanting to read! He is so proud of himself as he navigates through an easy book and remembers words we've worked on previously. If he could feel a sense of accomplishment over something, I think he wouldn't feel like school was such a drain on him. He is working so hard, I couldn't be prouder of my boy.

Homerun baby!

It was a homerun for Elijah tonight! If I could bottle up the expression on his face and save it, I would make millions. What a night it was for the D-Backs. Now, at the end of the season, the kids have pulled it all together and are powerhousing it through their games. I am so proud of all of them, but especially my little guy.

baseball

In his last game, Elijah hit a single, three doubles and a triple. Did I mention how much my boy loves baseball?

vacation

It took me a long time to realize that when you go away with your children you are taking a trip, not a vacation. A vacation is something you do on your own, with your spouse, or with friends. We just returned from our trip westward. Before now, I had never driven further than Chicago. When I was 14, my family flew to California, but truthfully that trip was lost on my youth. This was a planned drive to St. Louis and then through to Oklahoma City. We loved St. Louis! After looking online, I found "The City Museum" and we couldn't wait to get there. This is by far the best museum I have ever been to. Tons of climbing and exploring to do, Elijah was the most adventurous as there were places to explore in the dark but Sam loved the outside. I was hot and sweaty and very happy to be having fun with my family.

Oklahoma was hot and flooding when we arrived. They had 29 straight days of rain! We spent some relaxing days with family and explored the country west of the Mississippi. It is beautiful there. We even managed to rescue a baby Eagle and drove him to a wildlife rescue. The poor thing was so sick, but the vet said that they thought he would pull through.

I am glad to be home. Traveling in such close quarters (a car) and being away from home is very hard on a child with autism. His sensory system was on overload and he had no comfort zone. During the first day or so, I thought we were going to have to come home, but he settled down and we were able to enjoy ourselves. My heart just aches for him as you can see, he just doesn't know what to do with himself and therefore acts aggressively and impulsively. We will have to have a better gameplan in place to help us all when we travel next.

always thinking...

Sam is a kid that has always asked bizarre questions. Totally off subject sometimes and it never fails to catch me off guard. Today, he and Elijah are running their pretend(but don't tell him that) restaurant named "Oh Brother's" and Sam is the manager. He is sitting at the table and counting out his money and says "Mama, if a kid is a manager, would you call him a kidager?" Why would I worry about his IQ scores when I know that his brain functions like no one I know? Man I love that kid.

Ahh...Summer!

Summer is good. From as far back as I can remember, this time of year is the best. As I have gotten older, I realize just how much I depend on the sun to even out my moods. You can pretty much count on someone being unhappy in this house if it is cloudy outside. Mainly me, since I know it will mean that one or more children will need lots of prompting to find something to do for longer than 5 minutes. Honestly, I think the more "things" that kids have the less they know how to entertain themselves.

School is out now. Both boys had a successful year in their respective classes. We are moving to a new building in the Fall, I am fully prepared to spend some time with Sam again (kindergarten was a full month!) although I might be pleasantly surprised. I asked Karen (his teacher) if we could come in the week before just for him to walk around and touch all of the light switches/orient himself, and she said that would be fine.



Elijah's baseball season started two weeks ago, and the team is doing well. It seems to be a mixed age group of kids about half and half 7 and 8 year olds. He is an absolute freak about this sport. His team this year is the Diamondbacks and "the boys" are together again. Fun watching how they have grown and changedover the year. He is also doing two weeks of soccer camp.



Sam started an OT/Speech camp that is two days a week. It's focus is on peer interaction and he has goals that relate to his specifically and what he needs to work on over the summer. Two days down and he is enjoying himself. His behavior has been challenging to say the least.



This is when the PDD-NOS gets me down. He really can't be trusted sometimes. His impulsiveness and anger is explosive at times. I know he feels frustrated and it revelas itself as anger. I just wish I could show him how to communicate and not feel so stuck when it comes to getting along with others. I worry that other kids are going to shun him because of his temper or inappropriateness in his use of language. He really just wants to be "one of the guys".



These days the love and the pain I feel for him are about equal.

This should be easier...

I don't know why I think that it should, but I am bowled over by how difficult this is. I am just not a good faker, I can't pretend to be happy when I am not. This sucks, it just plain sucks.

This is the beginning...

So, I used to spend much time journaling. Now, not so much. I think I get tired just thinking about the energy it requires to just put my thoughts down in word form, that I just get discouraged and talk myself out of it. My paid friend(therapist) thinks it would be good for me though, so here I am.

My partner P and I have two great boys. Elijah is 8 and Sam is 6 and they really are wonderful kids. Sam is the miracle. Born at 29 weeks-yes, that is 11 weeks early folks, he is a walking, talking miracle. We just found out he has PDD-NOS. That means he is on the Autism Spectrum. How the hell did we get here?