My Children

I been very overdue for a picture of all 3 boys. The newest ones I had were over a year old, some I was using were almost 2 years old! They were all in the older boys room so I thought this was the time.

I can see most of everyones face, it will work


THIS is the TRUE image of my children!

Anyone want to guess how all of this went lol?

My Busy Boys

I think they were trying to build something. I was watching, seeing what they would come up with. Once I started filming Andy was more fascinated with the camera than anything, I love the expressions on his face. He left all the work to little brother. They were having fun.

Play Ball!

Yesterday I was watching the Brewer game on TV. Eric came down and seen it, picked up a baseball (from a toy, not a real one) started waiting for the pitcher to pitch and threw the ball to me. He don't have a soft throw, I got caught not ready a couple of times. He can now catch a ball too. Sometimes better than others, but I'm very impressed as this never happened last year. This kept us entertained for about an hour. The only reason I kept this game on because the Brewers were losing their tails. I don't believe how big Eric is getting. He's going to be 8 this summer! Wow! The camera flash can do some weird things to Eric's eyes. Yes, they do look a bit off in a few of these pictures, but that is all it is. He is ok :-)





In other news, Eric's IEP meeting was last week. All went well with that. With a little help from his therapist, I was able to give him a haircut. As usual, the job was not fun but it's done. We all came out unhurt, and he looks quite handsome :-) Can't ask for much better. He's also allowing me to give him eye drops when his allergies are acting up. This was totally unexpected, but I'm glad I didn't have to resort to oral medications and the fight, the side effects, ect. His 2nd ABA therapist is taking today off so after Andy is done we are going to the grocery store to get some fruit, ice cream, yogurt so I can start making smoothies for him . I continue to work with him on getting the saltine cracker in his hand. This could take a while. In the mean time he still needs his nutrition, and he takes it as liquid mostly, so one of my friends gave me this idea. I'm going to start with simple strawberry and banana, then in time starting to add some veggies. Since the feeding clinic psych people have run out of suggestions, it's time to get creative. We can still do it though!

Everyone Has an Opinion...

Yesterday the teacher from Birth to 3 came to do Jon's last evaluation of him to prepare for the meeting with the school district 5/4. I hate these evals because the test kit is colorless and boring to say the least. Getting him to sit for this is usually a chore. He gave us a pleasant surprise by sitting down with the shape puzzle. He spent plenty of time looking at and lining up the pieces. Once he did decide to start doing it he knew where all the shapes went. Some it took him a bit to turn to put them in, but the job got done and I knew he could do it. Did the same thing with the blocks, had no interest in stacking. He was able to put a penny in a little piggy bank, and nest some cups with prompting. He sat pretty well too surprisingly. Looks good right???...

Jon turns 3 in June. You could expect a kid about 1 year old to do some of this stuff. The delays, everyone agrees on. Just because he's performing better than his brothers don't mean he is where he should be. The teacher pointed out there are still missing pieces. He don't play with toys appropriately. While he does interact more with others, it is just to get tickles, get high fives and count backwards. He stares off in space at times. There is the spinning, the hand flapping, ect. She pointed out to me when we were done he just ran aimlessly, he did not go to play with toys like most kids would. This was what the ABA providers said and more. What a way to rain on my parade! People wonder why I get confused and frustrated. Back in the days with Eric it was easy compared to this.

I've seen so much improvement and promising things from Jon. I don't want to lose focus on that. On the other hand, I want him to be able to get the help he needs as soon as possible. He's doing great with the preschool transition class he goes to for an hour and a half 2 days a week. His OT has provided us with a compression vest that he is wearing there. The teacher says it's making a world of difference for him as far as compliance, sitting, participating with the group and keeping him calm. Here he is with it, not happy at the time because it's really hard for me to put on him and I don't think I did it right.

As it stands right now he ages out of Birth to 3 on 6/6. They stop providing services at that point. The teachers and therapists in the school district aren't into working summers here, and of course there is the financial considerations to the suits. Most likely he won't start with them until September. Our Early Head Start family advocate is going to try to get him in the next transition class that will last until Aug. and she will continue to see him until he starts school. There are also playgroups they run I can take him to so he can get the social interaction, but I have to stay with him and would need care for the other boys. We also discussed the reality of the services he will get at school. I never had much issue with Eric, and everything worked out really nice for him. I can already see now with Andy it's not going to be so easy. This school year has left me less than impressed with what he's getting and the direction they want to go with him. Yes, both boys did grow once they started school, but it was the in home therapy where they made real progress. School districts are very limited as to what they can do. The problem is to get the in home help we are going to have to get another evaluation, possibly 2. We are going to have to stress the weaknesses, whereas I would rather focus on the positive. It's a shame that anyone has to go through all of this to get the help their kids need.

With all that said, my plan remains the same. I'm going to wait and see how he does in school. I don't want to jump to any conclusions, and I think it is possible he could flourish with the regular social interaction. These last few weeks have been long, busy, stressful and exhausting with all these appointments. Frankly, I've had enough with evaluations right now and I'm sure he has too. We are going to relax and enjoy this week with no major appointments.

Speech Eval Jon

This morning Jon completed all 3 parts of the CHW Child Development evaluation. Today was with the speech pathologist and an audiologist for a hearing test. The hearing test went great. No problems there, wasn't expecting any though. Andy could not tolerate that booth where they did the test for nonverbal kids. Jon loved it. The SLP was the same one that evaluated Eric in 2005, just before Andy was born. It's nice having all that history and knowing how the process works. That made this appointment go much faster. We got in the room and immediately he went after a ring stacker. He was lining up the rings, not stacking them. But he was approaching both other adults in the room besides me. His eye contact was on. He was babbling away, said a few words. He was initiating interaction, and was letting the SLP handle the toys he was playing with. She said he was giving her clear messages with facial expressions, like when he wanted her to stop messing with the blocks he was playing with. While she was doing her testing it was amazing how much he could do. He responds to his name, the command come here. He can distinguish tone of voice and reacts appropriately. He is doing some imitating of sounds, songs that he hears regularly. With that, his results still show significant delays. He's in the 10-12 month range across the board. This really stinks. But, he is showing the pattern of speech development in children. He is heading in the right direction, even though he was very behind. This is very encouraging. If he was a one year old he would be doing very well and on track to talking soon. Whereas with Eric, his scores were all over the board showing no pattern, no direction. He's shown he is very responsive to singing and music. It was suggested I pick out 5 things that are important to him. Keep saying the word to him, linking the object to the word. Make up songs so it's fun and he remembers it. Once he can get that, he can expand more.

So now it's 3 for 3 saying they don't think Jon is autistic. At first, I wanted to believe that, but didn't. How could the very inappropriate play with toys and the unusual interactions with people be explained. Normally he gets so upset if someone tries to disturb his play, and gets very possessive with toys. Sometimes he is not as responsive and it seems he is in his own world. Eric and Andy's therapists have asked if I was going for more extensive autism testing and the lead said that their organization would most likely be working with Jon too. They know what they are talking about right? They are experts in this field, but this is their business and of course you want to bring it in. He shown some of his aimless running and wandering today, as he did in the waiting room for both other appointments and some with the psychologist. Nobody thought much of it. He is much more interested in people than his brothers ever were. He makes good eye contact much of the time. He is making much more of an effort to talk and be sociable than Eric or Andy did at this age. The way it was explained to me today made me feel more confident. I feel that I can hold on to this encouraging news, with very little question. Maybe it's just me needing to let go of the stress, but I feel lighter now. The plan is to see how he does once he starts school in the fall. Continue with the suggestions of this SLP, EIP and the school district to keep him on track. If there are issues that come up, or the signs become more apparent I will pursue further evaluation at that point.

Feeding Update for Eric

His appointment at the feeding clinic was last Thursday. I've been nervous about this appointment and dreading it for a while. He's gone backwards, and has lost a lot of the progress he's made. In his head the only thing that is food is his cheerios, and drink is his pediasure/CIB or fruit juice in his "orange cup" (that's what he calls it, it's that old baby nuby cup). He is so rigid and set in his ways, and at this age it's hard to change. For a while he was doing good when his therapists were here, but would not do anything for me. Now it's a fight even with the therapists, the ones that are still doing this. Some of them are getting discouraged. My ability to work with him has been limited due to having surgery, then other health issues to deal with and also having to work with his 2 brothers that have special needs also. My follow through needs to improve no matter. I feel guilty about this, but I can't change it now. We must move forward.

The appointment started of with some good news, he has gained 6 pounds since his last visit. That's awesome, he needed that. He still won't allow them to get his height. There was a lady who hasn't worked with Eric before doing that and I kept trying to tell her he didn't like that thing coming down on his head and won't let her do it. She finally talked to the team and was told no height needed and we were brought to a room. The psychologist came in quietly while I was talking to the nutritionist. Then we told Dr. F what was going on. She told me that she had to talk to her team of psychologists because she has nothing to suggest at this point. She is going to talk to her team about putting together a plan that can be done inpatient with him, but it's unknown if this can be fixed in 2 weeks. I highly doubt it. I was told otherwise that he could be sent out of state if they can't do anything for him. Problem with that is WI medicaid most likely won't cover that. Never mind how hard either of these would be on him, and the rest of the family. Care for the other kids, I wouldn't know where to begin. So doing this at home is really much more desired, but there are limits. You can't just take away what he will eat and drink because he will not give in, he will get sick. Inpatient treatment is a hellish way of doing this. It's so discouraging that they are just throwing their hands up in the air.

Here's the plan for now. We are going to work really hard on him eating his cheerios with a spoon. Once he has that down we are going to start adding very small amounts of milk, and work with that until he can tolerate it. I've also bought other flavors of cheerios that I will give him to get used to new tastes. A wonderful lady I met on Twitter through The Coffee Klatch, and am also talking to on Facebook now suggested that I try one food, putting the food on her plate, touching the food, then bringing it to her mouth, and eventually taking a bite. This could take weeks for one food. I am starting with a saltine cracker. So far not going too good but keeping on. This child has also had a wonderful OT working with her, helping her make so much progress with eating. Eric has OT at school, but it's no more than an hour a week (Andy's is 1 hour a MONTH!) and they still have to work on writing and school related stuff. His school speech therapist does what she can. The ABA therapists try, but they and the psych doctors at the clinic are all about behavioral training. Yes, he needs that but I think sensory issues are just as much of a problem but not being addressed. Very limited time and money don't help. So we do what we can.

God I would give anything for these boys to eat. It comes naturally to almost everyone, why can't it for them? This is so frustrating. It's been hard for me to find the words to get this out. There are so few people that deal with this type of thing and can even begin to understand this. I feel better now that I finally have. From here, we can hope something works for Eric.

I Love Someone With Autism

This video is the hard work of Mr. John LeSieur, President and CEO of People CD and the creator of the ZAC Browser for autistic children. One of his friends on Facebook came up with this idea and he was going to have it done for World Autism Day on April 2nd. It was so big and great that it needed an extra day, the wait was totally worth it. I sent pictures of Andy and Eric and they are in there. Thank you very much John, and everyone that worked so hard on this, and to all the parents that sent pictures of their children to share in this. The link goes to Mr. LeSieur's Facebook fan page where the video is. There is also an HD version that you can download and play full screen if you choose.