One Step Closer...

This time I was able to get the picture while he was still holding it. He is really talking in it. There is nobody on the other end of the line. I was doing the talking instead. This is a real phone, but it's only plugged in to electricity, not the phone line. The real phone here is a cell phone. With the right person I think he could handle himself in a short phone call.

Eric has gotten so much better at expressing himself verbally. This morning before therapy I had to get him dressed. He wanted to eat, when I told him he needed to get dressed first his response: "I'm mad!" and the tone of voice to match. Later he told his therapist in no uncertain terms to "Go away!". Wow,I thought I had a little boy, not a teenager! He is also learning to use the words yes and no. This was hard for him at first but he's getting better. The things taken for granted by most of us...

The long days have been hard on him and it's been showing in his behavior and moods. It's times like this when I know we are doing the right thing and this is worth it.

The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)

I'll Take Being Pulled Along for This!

After therapy Andy came up to me pulling my hand and he said "GO GO GO GO GO" all the way to the fridge. I asked him if he wanted milk. He said "YEAH YEAH YEAH YEAH YEAH!" So by all means he got his milk, and lots of praise and tickles. Wonderful moment!

Jon's CHW Evaluations Part 1 and 2

Yesterday was his appointment with the psychologist. We didn't leave soon enough so I was rushed. I forgot the stroller, so he had to walk with me. This was not starting out well, and he was letting everyone that could hear know that. I had to carry him in. Thankfully the check in was very simple and only lasted a minute or so. He sat in my lap cuddled up to me. The doctor came out and introduced himself. Jon was still clinging to me. This lasted through the interview with me. I was worried, but not surprised. Then the doctor took out bubbles and started blowing. That peaked his interest. A smile, then a laugh soon followed. He left my lap and started popping bubbles. He was babbling away. He came up to the resident pediatrician, looked at her, touched her arm and smiled. He did the same to the psychologist. They would call his name, he looked at them. His eye contact was really on. He played with the toys that were in the test kit. Yes, these were toys for babies and kids about 1 year old, but he did what the doctor wanted with them. Transitions were smooth. His toy fumbling tendencies must have taken the day off. He did line up blocks for a bit, but with generous prompting he started stacking them himself. The doctor was allowed to touch the toys he played with, lucky guy. There was a very cute 33 month old child in that room, you wouldn't think anything different if it wasn't for the lack of speech. Jon, Mr. Charming was in the building. That was great but...

Maybe he just ignores me when he's busy doing his thing. If he likes you enough, he may share his toys and allow others to try different things with him, otherwise he gets possessive, set in his ways and will only do what he wants. Dare I look at or touch the blocks he is lining up or the pegs he is fumbling. His sensory issues must be a figment of my imagination. I guess I'm just a liar and his therapists and Early Head Start worker didn't really see these behaviors I've described even though they have them written in their reports. Just like when I know something is wrong with my car and bring it to the mechanic just to get a piece of paper saying that the problem can't be duplicated along with a sizable bill. That didn't fix my car, just as this didn't help my son.

We all have our days. Jon just happened to be a good mood once he was able to relax there. This was an one hour plus appointment. I am with him all the time. The doctor really knows what he is doing with these kids which helped. The forces lined up properly and the toddler I brought was on his best behavior. I will admit that Jon makes much more effort to be social and interact with others, and talk than his brothers did at this age. His eye contact is better, and he scores higher on cognitive testing. With 2 children on the spectrum and already diagnosed without much dispute, it's pretty natural to think that if my other child was showing some of the same signs, that it's quite likely he is autistic too. That is all I know. I could be too quick to jump on the assumption of autism with Jon. That would be great, but it concerns me that he won't get the help that I know he needs. It also makes me wonder if I am doing something wrong. It's hard to know what to think.

He does have extensive developmental delays. The toys he was playing with were suitable for a 1 year old and he was interacting with them in that way. He turns 3 in a little over 2 months. The psychologist thinks he may be to sociable to qualify for an autism diagnosis. We shall see. Today was the physical exam. He walked in there real nice, was playing with the toys in his own way and was happy and friendly up until the exam. The only concern this doctor brought up was the possible genetic connection with 3 brothers all having similar developmental delays. We now wait on insurance to decide whether they will approve the testing.

There Can Be Too Much of a Good Thing...

Even if it is therapy to help my kids. Andy’s therapy hours are ramping up quickly. He is doing awesome. This is great but our days are long.

The boys are getting funding from the state of WI to cover 20-35 hours a week of ABA based therapy. This intensive phase lasts 3 years. In order to stay in the program, they must get a minimum of 20 hours a week; otherwise they are dropped and can’t return. Illness, emergency, , or an occasional vacation is OK. This can’t be done half heartedly. It’s all or nothing.

Andy’s therapists come from 12-3 pm, and then Eric’s come in from 3:30 to 6:30, with an overlap of both boys on Saturday. Eric has one session every Sunday, and every other Sunday another therapist comes later in the afternoon for 3 hours, so from 10-4:30 he has therapy. In order for him to get his required hours since he’s in school full day, the Sunday is a must :-( . I understand most kids have homework, and parents don’t get time off. Most adults would not go for having to work 7 days a week, and still have to work when you get home. I have to ask this from a 7 year old! Andy’s school is half days 4 days a week. Kids need time to play and rest. This strain has really shown in their behavior. They are very moody and irritable; the aggressive behavior has reared its ugly head. Their sleep has been very poor; 2-3 hour a night. These boys having such a hard time along with lack of sleep, very little adult contact, time out of the house, and physical health issues sent my emotions and mental health downhill. Eric’s bus broke down and he came home late Friday. This bus thing, then the therapist here right when he got home had him very upset. The tantrums were very violent. While I was waiting for the bus the neighbor kids were outside playing with friends, in their scout and sport uniforms and I am so wishing this could be my boys, my life. It hurt, bad. All of this did me in emotionally. Something had to be done so…

I cancelled all therapy last weekend. The boys and I just relaxed, let go of stress as much as reasonably possible. My boys are much happier with no major tantrums. Their sleep is back to reasonable levels. I'm finally starting to feel better. I’m ready for all the evals, meetings, and appointments for the kids coming next month. They are happier and relaxed. It’s time to return to reality. There will be more long days being cooped up to face the next months. During the summer there’s no therapy on weekends. Jon will be going to school this fall. I'm hoping it will be the same time as Andy. If not, it's another year. We will get through, one day at a time. We will take what we have given to us. No matter if it's a bit cold out or it isn't much time we will get outside some. At times I felt selfish and overwhelmed and wanted this all to stop. I need to care for myself to care for my boys. We all need breaks. It is OK, and necessary to do this when needed.

Off To A Good Start

Andy's team of line therapists have started their training with him. They worked with him for 2 hours today and handled it very well. There was a meltdown when I brought out the vacuum cleaner. He ran upstairs to his room and was crying for a good 10 minutes. I printed out the picture of the vacuum I posted on here. At first he kept throwing it and turning it over, eventually he started looking but was never interested. The senior therapist suggested finding videos on YouTube with vacuum cleaners. I was able to find a few with young kids using vacuum cleaners, some of these kids really love these machines and even collect them! Here is a great one. Andy usually loves YouTube but he would look only briefly at the vacuums. He didn't melt down, but he did try to avoid them. So that's the plan of attack for this. This was also the last of the tears.

We are starting to introduce him to a sippy cup and get him to hold and put a toothbrush in his mouth on his own. Was he thrilled about this, nope. He runs away from the sippy cup. It took forever to get him to take the tooth brush. The following pictures will tell the story.


Holding it empty.


Ready to go with all your equipment Andy?


Took some convincing to get that toothbrush anywhere near his mouth.


Holding it with milk and laughing!!!


Score!!! Why can't I get you to do that???

He would run away from the cup, put it down a second after he took it in his hand, he would push away. There were no tears or tantrums. He didn't even get upset, just shown he didn't want it in his way. But he did hold it. It was never more than for about 30 seconds, but we will take it. He has NEVER taken a tooth brush and put it in his mouth by himself for me. My daily attempt to clean his teeth is not something anyone looks forward to. What's up with that Andy? We have the evidence now, so no excuses. When he asks for food he is saying "eat" very clearly without prompting. He said "up" to go upstairs. Eric's favorite word also came out of his little mouth, "tickle".

This is going much better than I expected it to. They have not gone hard core yet, but they are getting down to business. There are solid plans in place for him from the get go. Compared to how it was when Eric first started, it's very impressive. Andy has been exposed to Eric's therapy for over a year so that may be why he's been so cooperative? I'm sure he'll have his moments. This is great to see. The schedule, well it's going to be quite busy once both boys are at full hours. Since this is a home based program, that's where we are going to be, a lot. I also have to work with the boys on everything the therapists are doing. This is a big time commitment. There is only one of me. Once the summer comes we should have weekends off and in the fall all 3 boys will be in school. So it's going to be a few months we are going to have to hold on and do the best we can. It's all worth it in the end.

The Dreaded...

VACUUM CLEANER!

Poor Andy is terrified of the vacuum cleaner. He starts crying inconsolably and runs at the sight of the machine. If he hears it going he curls up in a ball and screams. Quite the extreme reaction. Andy's therapy team is now together. Hopefully they can start training tomorrow and working with him. This is one of the big things on his plan, desensitizing him from the vacuum. Here is how we are going to start...

We are going to start with a picture of it. Then it will be having it near and looking at it. In time, we get to turning it on. Slow process. Even if he gets to a point where he runs off with his fingers in his ears like Eric, at least that's reasonable. I don't love the sound of these machines either, but it don't get me out of using it! So this is the new home for my vacuum for a while.

Caught Again!

Caught you red handed with those yummy jackets Jon! He will chew and chew the rough side of the velcro for a good amount of time, this is a regular sight around here. This picture dont give this justice. He chomps like crazy on the velcro straps around the cuffs of these jackets, any velcro that exsists on these things. God help us if one of his brothers have the nerve to go out and leave for school or something and need their jacket! Yesterday during nap I seen him chewing on a strip of velcro on Andy's jacket (the yellow one) in his sleep! Don't think we want to go there. Can we say addiction? Gotta love these oral sensory issues. I'm thinking of buying some velcro and sewing it to some fabric so hopefully he will chew that instead of his brothers jackets, velcro on shoes, ect. Don't know of anything else that would feel similar but would be more appropriate.

One Little Word...

This was the first good note I've gotten home from school in months. Yes, this was a few weeks ago, I'm a little behind here with the blog. But anyway, this is from a child that was mute for over 2 years, at least. "Eat" is the first word that Andy has learned to use with meaning. Yesterday was parent teacher conferences for both boys. Andy's teacher told me about one of his classmates coming up to the teacher all excited because he said that one word. This little girl was just as excited as the teacher and I, and was the first thing she told her mom when she came to pick her up!!! :-) These are awesome folks Andy is with for 4 mornings a week. Just a few months ago he was having such a difficult time with school. That has very much improved in the last month or so. The hope is that when more communication comes less frustration and tantrums and outbursts. He now points to a loaf of bread and says eat every time he wants some. It's an awesome start Andy!