Never try to plan...

I have learned in the long month since E summer vacation began it's almost certain plans will change. Even the best laid most careful plans will change. To anyone else, that makes perfect sense, but to E it's a hard thing to handle. Change makes him nervous. It must be painful too because he seems to scream in pain when they occur. Due to a rash popping up all over E, I chose to keep him home from summer school the last 2 days. Today and tomorrow. It's the right thing to do, but it is not an easy thing. I moved his swim lesson to earlier to break up the long day. Our scheduled therapy had to be cancelled for other reasons. We have played outside, gone to swim lessons, played inside and now we are back outside playing. So far the talley on meltdowns is 4. (2 at swimming and 2 at home...) It's only 12:50. Seems like it should be close to 5:00 pm by now...
Well now it is 5 and there is much to tell. We were outside from 12:30-3:30 and E was still not ready to come in. I told him Daddy was coming home early and we could ride in the jeep to get yogurt. He just needed to come in and eat dinner first. E ran all over the back yard away from me. Once inside he continued to run away and added in throwing things. This behavior used to anger me but now I understand it's because he cannot talk. I feel like he really thinks if he can express his wants they will happen. I try to affirm I understand what he wants and that it is now time to come in for dinner. This does not go well at all. E ends up in time out in his room. We are still potty training so he is not dressed as we were on our way to potty. After a few minutes I go in to talk to him. He immediately acts like he is going to potty right there. I tell him to go to his potty. He looks at me and pees on the floor. You know my day is going bad already so I decide to ignore this and proceed with evening routine. Bath and then maybe dinner. He did not eat much when we came in out of protest. He lost the ride in the jeep to get yogurt as a consequence of his behavior. He tries to barter for a ride in the stroller and I tell him, yes, in the morning. He looks at me and goes on. Thank goodness for that speaker for PCLDA a few years ago on positive behavior. Bedtime is here and not a moment too soon for this tired mommy. Luckily I have more things planned to do tomorrow. Maybe there will be less time to meltdown.
I hope...

Change, change and more change

E started ESY this week and that has really helped bring some consistency to his days. So far he seems to be doing ok. ESY is 3 hours and a full school day is 7 hours. It's harder for him during the full school days to stay on task. Thankfully we still have Ms Erin our behavior specialist. We have not scared her away yet. She has worked with E since he was 3. (I think we may need her for life. Ha ha.) I am still looking for a speech person. E is asking for Ms Pam daily. I told him it's summer now so she has her children home. She will come later. The problem is she will not come later as HPISD changed their policy and no more private therapy at all to HPISD families. Bummer. I can't tell E about that yet because we are already dealing with our pediatrician moving. She has a temp location for July in Los Colinas and will have a permanent one in Midloathian after. I have an interview with a  possible new Dr on 6/19, but after today I am seriously considering making the drive to Midloathian.
To say E was crazy is an understatement. I did my best to prepare him. Telling him Dr Clifford has a new office and there are new people. We were going for an ear recheck. I always take him after RX to ensure they clear up. I was afraid there were not clear after the behavior Monday and his lack of sleeping ALL WEEK so far. We headed out to the new office and instantly E was upset. Whining and making nervous noises. He knew we were driving a different way. He knows the routes to our usual spots and we have to go the same routes or he gets upset. I blogged about this 4 years ago and it's still the same! We get to the new office and it is much like the old in that it's near a hospital. E is panicking at this point and does not want to get out of the car. I show him a jeep we can go touch so he gets out. E loves Jeeps!!! He does not want to hold my hand and flops to the ground several times. Finally get to front door and he does not want to go in. Screaming and making more nervous noises. Lots of people staring. I don't look up as I have learned not to, but I feel them. I get him to a bench near the from door. I am whispering to him the entire time. I used to yell, but then we both look crazy. I whisper to him. This is a new place. It is ok. Dr Clifford is here. She is just going to look at your ears and we will leave. He decides to get up and come with me. We are quite a site heading in. I am trying to keep him close, but he is resisting and making every louder nervous noises. We find the office and enter with a bang. Literally, I think we shook the entire building. Lots of more stares. This time I made the mistake of looking up. I go to the window and sign in. E is still making loud nervous noises. I apologize and say, we have trouble in new places. There were children on the side we entered, but the desk person directs is to the other side and says it is more child friendly. There are fish painted on the wall and one mom and little girl waiting looking at us like, please don't come over here. E is STILL making noises. Luckily one of the girls from the old office is there and says,"Emerson! Come on back!" We go back and E continued to make nervous noises. We see Dr Clifford and E runs and gives her a big hug. She checks him out and he is fine. No fluid. Not red throat. I am relieved and sad at the same time. If there is nothing physically wrong then it's behavioral. E is having a hard time adjusting to the summer. Once again something fun and easy for most other children creates stress and panic for E. I will continue to try and help him adjust. Water and outside time seem to help the most. The day continues and there have been a few more bumps in our road as we make our way to bedtime. E decided to obsess over the neighbors water bottle as I looked for a few seconds of adult interaction. Finally inside and E realizes the jump start baby CD is not here. I left it at my moms. There are several other games but he wants that one. Get E upstairs for a bath and the metal curtain rod falls of the wall in our master bedroom almost breaking a lamp. Seriously...  Out of bath and winding down with a game of bowling. It's bed time soon! Tomorrow's another day! An easier one... I hope.

Rainy day and ESY begins

I was so hopeful this week would be easier. ESY started and there would be 3 whole hours a day that E would be busy and I was going to get so much done...
E struggles with changes in routine. He gets very nervous and tends to act erratically. Summer is a care free and unscheduled time which I remember loving as a child. For E, summer brings fears, anxiety and lots of uncertainty. I do the best I can to tell him and show him a daily schedule. He repeats it in Proloquo over and over. I reassure him each time that is what we are doing. Sometimes, things change. E had a great first day at ESY and I am very thankful for that. When we left I noticed he was a bit erratic and tried to let him touch the sprinklers and stop signs and do other things he needed. I parked the car on the usual street, but it was a little closer to the school  because ESY is not as crowded as school during the year. Perhaps this was a BIG mistake. E was upset the car was not in the other spot further down the road. I told him I would park there tomorrow. We walked down so he could see the spot and walked back to the car. E did not want to get in the car. I was already muddy around my waist from picking him up several times. He finally got in the car, but the car seat still was empty. Behaviors started. Car key was tossed in the front seat by E and he locked the doors. Thankful I had the back passenger door open, I climbed in and opened the front door setting off the car alarm and more behaviors. Let's just say it was not a pretty site and my 12:30 board meeting, I missed. We made it home and the day was revamped. I sent my report for the board meeting I was missing. E regrouped and has now been outside for 3 hours playing with water. It's very calming for him. It's raining, but no thunder so it's still safe. Very muddy and messy and he is completely calm and happy. Maybe the rest of the week will be easier...

All E day 2

I am not sure my day is any different from the other millions of moms out there with a toddler. I think the thing that makes is hard for me is E technically is 8 years old, but developmentally still much younger. Hard to say for sure what age because the testing completed on him requires verbal answers and he is still pretty much non verbal. He uses Proloquo on his iPad, some signs and then he points a lot to colors and I am guessing. It's like playing charades all day with really bad clues.
Anyway, for this day I made sure to have 2 planned activities. Not just 1 like Tuesday. We met Ms Erin at NP mall for some walking. E was beyond excited to see the Hammering Men back. I made sure we met her early, 9:00, before the mall opened knowing E would need some "quality" time with his friends. He was beyond excited! Greeted each one with a big hug. He was also signing more indicating he was concerned they might leave again. I assured him they would be there for a while.
E did a great job walking at the mall this morning and he was so happy. It was a 90 min fast pace walk for me and Ms Erin. It did not help my errands are usually driving through banks for work or non profit. What do banks give kids? Suckers!!! E had 2 suckers before we even got to the mall. My one cup of coffee was hardly a match. After the mall we came home to play outside and eat lunch. 2 1/2 hours outside with water and mud. Time for a quick lunch and then to swimming lesson. E said no all day to swimming, but once we got there, he was so excited. He kept signing "more" when it was time to leave. I told him we have another lesson tomorrow. When we got home I was glad we decided to forgo the grand opening of the HP Town Hall. I was exhausted! E was getting there too. I gave him a bath and we played in his room while he ate dinner again. E was excited Daddy came home before bedtime. E does not sit and watch TV or play video games yet. He is a very active child.
I am exhausted at the end of most days and have rarely sat on the furniture in my house, I would not have it any other way. I love him so very much. I just hope I can keep up with him for the summer.

A Summer day with E...

Technically it's not summer yet and this was not the first day schools been out, but it's the first full day home with E trying to keep him busy all by myself. The day started better than yesterday so that's a plus. E woke up asking about the same thing he went to bed requesting. Jump Street. He found an old video on his iPad and would not stop asking. By asking, I mean jumping up and down and touching blue and red things in the house. Wanting me to reply, yes we are going to jump street when it opens so you can jump in red and blue blocks. I called yesterday to see if they were busy for the summer yet. Most school are in session so I figured it would be a good time. It was only 8 at this point so I tried to engage him in a few other activities and then we went for a walk. After the walk, (E uses a special tomato stroller when we walk) we got ready to head to Jump Street. We got there at 10:15 and the place quickly filled up. We had not been in a while so his usual friends were not there. He made new ones quickly and I saw him get a helium balloon from one and let it go. Then upset it was up on the ceiling. I was asked several times how old he was and if we paid to be in certain areas. I explained to them we did and he will not tolerate a bracelet so they gave us a sticker and he's 8! The young workers were shocked at his age as he's pretty small weighing only 40 pounds and even more shocked when he darted off from spot to spot. E maneuvered the small crowd pretty well and I prayed he would not run into anyone. (He has already suffered 2 minor concussions). I saw a mom that knew us from PPCD. I was so happy to see her 5"2 son playing dodgeball with all the other kids. She looked so "put together" and pretty too. I was in my workout clothes very un-put together as I followed E around the building. I was dressed for my day! Ha ha. It was so nice to see a friendly face and have a table to leave the bag at. A sweet little boy came up and said Hi Emerson. He told me he went to school with E. I tried to get E to say Hello, but he was too busy rejoicing in the surroundings. We were there for 1 hour and E did not stop moving. He paused as the man filling up the dots ice cream machine left it open for a moment, but I told him to move along!!! I was very proud of E. I was able to get him to the car without a tantrum. I started talking about leaving 15 min early and that helped. It gave him time to run around and do everything one more time. One time I did not do that and it was a disaster leaving. I had to run a few drive through errands and E ate his lunch in the car. When we arrived home, E wanted to go immediately outside to play with water and dirt. No rest for the weary me... Outside we went for over an hour. When we came in I was trying to work after he ate a snack, but that did not last long. He watered the carpet in several places and finally able to get him to the bathtub. I know it was early, but he was dirty. After another defiant dump of water on the carpet bath time was over! That's right, bathed and in pjs by 4:30... Time for dinner! E is not a sit still kinda guy so meals are a challenge. I can fight with him and set a timer or just let play and eat. Today was a play and eat dinner. I told him it was time to play with toys or we were getting rid of some since he never played with them. He chose hex bugs. There were no less than 10 that needed a new battery which is the size of a small watch battery. I keep them on hand, but still a pain to change. Especially 10!!! Overall, really a pretty good day, but I am exhausted. Time for bed!

So that's what it's like...

I have been thinking more about E and his fabulous last day of school. There have been so many times I have seen other children doing things like sports or walking by their parent with out holding hands and wondered... What must that be like? I see Facebook posts about winning games and being most valuable player. Graduation from college and proud parent post about a child hitting a home run or scoring the winning point and wonder... What must that be like?
E has his own victories, and we celebrate then just like the parents of the child that scored the winning point in an important game, but Friday was extra special. E was able to participate in field day events with his general ed class. Just seeing him able to sit with the class and participate was am amazing sight! The sense of pride Geoff and I felt was over whelming. What a great day that was!!! Thank goodness for days like that. They make the difficult days easier to bare.