Still On Hold

Eric has not had therapy regularly for weeks. It was called for all last week because of Andy's skin infection, which in reality is just like planters warts. Two doctors gave Andy a release to go back to school, Eric's school was not concerned about this. Last week Andy was able to go to school without any issues from this. They told me they would restart therapy Monday. Early Head Start and Birth to 3 still came to our home. The provider still would not bend on their rules, they stood pat with Monday. Last weekend both Eric and Andy came down with colds. The provider decided to wait until Thursday to start. This I can understand, since Eric has a pretty nasty cough and runny nose, is cranky and really not feeling that great. This cold is more of a threat to the staff and other kids than Andy's skin infection. This makes all this from last week much more irritating. I've been assured he won't get kicked off the waiver, but it isn't doing him any good if the darn therapists aren't coming. They called today, asked if the cough, ect was gone. It's not so I said no. Now we wait until Monday. The school is still not sending them home because of this. Early Head Start was here this morning. You would think if you work in this field, or if you have young children dealing with frequent colds and such comes with the territory. Yes, illnesses can be more severe in autistic children and I do worry sometimes with my boy's limited communication skills and nutritional intake that something could get serious and they could not tell me. But I had to let go of those fears because it's a necessary risk to get these kids the help they need. At this point I am beyond angry about this therapy issue. I feel bad because I'm not fighting for Eric more. It's futile, makes me very stressed and I am just tired out from it. I sometimes wonder if they think this is somehow my fault, I am sure they will find a way to make it look that way. I'm doing what I can with Eric at home. He is doing great with the talking, but the behavior issues are getting worse. I've been having problems with aggressive behavior from Andy too. It's so frustrating all around. I wish I could do more...

What Kids Won't Say...

Despite the lack of therapy as of late, Eric is really starting to say a lot. We are still a long way from a real conversation, but am hearing the beginnings of it.

Every morning he points out the window, where the bus would pick him up and say "time for school". Doesn't get the weekend thing yet, but we are getting there.
He is identifying his therapists by name, sometimes he gets a little confused and repeats a name, but he has a winning record going :-)
I had talk radio on at low volume one day while therapists were here for Jon, it was one of the last days of summer vacation. There was a high profile company in the state that was having contract disputes with the union, and the one therapist commented that it looks like it will be bye bye jobs for these folks. Eric chimes in with "bye bye Jon Jon" Baby brother is not going anywhere Eric.
One day he was having trouble getting his shoe off. He said "oh s#!t!" Yup, he's repeated it before, I've been very careful so he don't hear it but he still said it on his own. Thankfully it was only once!
Speaking of shoes, he will point out in the kitchen, where he puts his shoes and socks once he is done with them, and say "socks, shoes" then "I want to go outside." Problem is every time he does this it's at a time I can't take him :-( You don't know how bad I want to take him outside though since I'm so happy to hear it! He also says upstairs and downstairs very clear now.
There were times when Jon was crying and I heard Eric say "calm down", not like baby brother listens ;-) Last night he was eating, and he looked right at me, pointed at me and said "calm down", with plenty of authority too! Was he trying to tell me something? I wasn't upset. Maybe he could pick up that I'm stressed about this therapy issue, who knows. If he can pick up on my emotions, I'm in trouble...
"oopsie" is very much a favorite word of his, and he uses it appropriately. It sounds fun, why not?
Tonight I told him to turn off the tv , he asked "why?" I told him it was time for bed. Why? Because it's time to go to sleep. Why? Because I said so!!! Why?
Maybe I better be careful what I wish for? It sounds so sweet right now I don't care if it's annoying!

Attack of the Molluscum Contagiosum

Huh??? What's that???
Seems to be a very popular question these days around here. A couple of Fridays ago Andy's school called me and told me there were some bumps on his elbows, hands and knees that look like chicken pox, but the school day was almost over so they sent him home at normal time. I took him to the doctor soon after and chicken pox could not be confirmed because there just wasn't enough evidence suggesting that. I was told to bring him back Monday morning. So I cancelled everything until I had more answers. Brought him back last Monday, doctor said it wasn't chicken pox but didn't know what it was. He gave him a release to go back to school and referred me to a dermatologist if it didn't clear up soon on it's own. I will be honest, I gave it a couple of days because I would have to pay for the specialist out of pocket since I could not find a dermatologist within reasonable distance that took his insurance. The hope was that this would go away. The next day the school sent Andy home because of the blisters. I finally bit the bullet and made the appointment for the dermatologist. They were able to make an appointment for Friday.

The word from the dermatologist after a thorough look, Molluscum. In short, this is a viral infection that hits the surface of the skin. It's similar to warts, it's in the pox family of viruses but nothing serious like chicken or smallpox. This is commonly spread among young children in daycare and schools from direct contact, and from sharing clothing, towels, ect. Until his little immune system totally fights of this virus we may be dealing with outbreaks of this. This could takes months to a year or 2. There are probably many kids who have had or have this and it was never detected. Very few people I have talked to have heard of this and know what it is, which is leading to a problem.

The dermatologist gave him a release to go back to school, explained to me that this is nothing that should keep kids out. I sent him this morning, he was never sent home. The remaining bumps are crusted over, the rest are healed. When I told Eric's senior therapist about all of this, and gave her the pamphlet that the dermatologist's office provided I thought we would be set. I get a call later that day saying that she is going to discuss this with her boss that was on call for the weekend and the therapist that was supposed to come and see what would happen with therapy. The concern, the fact that this is contagious. The decision makers decided to cancel therapy for the rest of the weekend. I called this morning and they wanted more info. I spelled out the name of the condition for them so they could research it on the internet, I had the dermatologist's office FAX the pamphlet so they could read it. I called around noon and was told it was decided to give it a week for Andy to heal and make sure he don't break out more, then a decision will be made first thing next Monday morning. So now we sit and wait, and Eric is not getting therapy. Without boring everyone with my full opinion on this, I will just say I am not happy. Considering everything I stated above about Andy getting better and getting treatment, the fact that the worst that would happen is if someone had a very weak immune system the rash would get really bad. He is not scratching them so they are not spreading as much as they could. This is not bothering him, and he is carrying on with his little life as he knows it. It could be a while before this is totally cleared up. I understand the close contact they have with Eric and all, but Eric don't have it! I'm going to continue calling around to see if we can make this wait a little shorter so Eric can continue with his very needed therapy.

Breaking Resistance

Last week I started noticing Eric was taking drinks of water or juice out of his straw cups independently. His teacher and school are concerned about him not eating and drinking anything at school for nutrition and hydration reasons. They do not want his preferred cup there, and he has to adjust to a new teacher and routine again so he is not comfortable using the straw cups at school yet. His feeding clinic appointment is Sept 16th with the whole team, including the GI doctor. The psychologist there told me that if no progress has been made the hospital will be strongly recommended. I would prefer to avoid that due to child care issues with my other sons if I could. If it has to be, we'll find some way to make it work but I would rather not. The pressure is on, and as seen from my last post therapy time has been in short supply, and will be for God knows how much longer. While they were here this summer I watched and learned a lot of the ABA techniques and really started practicing with him at home, and in everyday life. With all of that I felt quite confident and patient, and the time was looking good so I took matters in my own hands. I hid the preferred cup and brought out the straw cup with his CIB and would offer him nothing else.

This has not been easy, nor has it been fun. He has been crying, screaming, fighting, kicking and hitting me, and still not drinking a real lot. I have to keep persisting until he complies, can't give in. All the while it is necessary to stay calm. This is not easy to do. The hope is that he eventually gives in and accepts that is how it's going to be. This plan worked with the haircut, and I got the job done and it looks quite nice if I do say so myself ;-) (I did have some help from his therapist there). This is harder because Eric has it in his head that the only way he can eat and drink his main meals is in his chair at the table and out of his preferred cup. There is no flexibility in his mind and the resistance to any type of change is VERY strong. This is how many children on the autism spectrum are wired to think, it is very rigid. It is possible to break through this resistance and change their habits and routines, but it is not pretty to watch or carry out. Yesterday was a tough day for most of the day, until his before bed feeding. He let me guide the cup and straw to his mouth, and he sucked a little out of the straw. I asked him to take 10 drinks, counting all the way through it. He still isn't thrilled about it, but he is doing it without any major tantrums. We're starting to get the desired result. He's so close to accomplishing this transition I can taste it. All the tantrums, bruises, yelling, lack of sleep and stress is paying off. I really think he can take this all the way this time.

Yesterday after school he seemed quite tired and out of it, and I noticed that he didn't eat or drink anything at school. So I did give him his drink from the preferred cup at that time to get him what he needed. I resumed with the straw cup at the next feeding. That is where the real fight began until the next session where he finally started to give in. I'm putting this in to let everyone know that I am not putting his health at risk to do this and that I am going off the guidance of his doctors. Professionals really need to be involved when doing things like this. I am glad to see that he will drink the water and juice with the straw, and with various cups. Without this I would not have attempted this with his CIB, which is his main nutritional source.

Keep rooting for Eric everyone. We are almost there! I will update once we make it.

Fall Therapy Updates

There hasn't been much going on. Most of Eric's therapists have gone back to school and have very limited schedules and Eric is not on it, or they left the company. The thing is, these therapists gave me 2 weeks notice that they were leaving. The company should have known this and started hiring and training while they were here. He was running short on hours for August because of his week of camp and staff shortage. Add in the fact that some there has been sickness and vacations with the therapists too. Now that the fall schedule has started his therapy schedule is quite short to say the least. One of the new trainees lasted a week. The other one I am not sure about. There was another I met briefly once but she didn't seem that friendly. She's on the schedule for Sunday but she isn't trained in yet and I don't know if she is staying with Eric or not. Eric has had one day of therapy this week. His next day is tomorrow for 3 hours. From here, who knows. The state requires a minimum of 20 hours a week to stay on the funding waiver. Hopefully the provider has talked to who they need to about their staff shortage. Personally I think they should have prepared better for all of this, but I don't know everything that goes into this either. This is the 2nd provider we've worked with and it seems to be the nature of this business. Hopefully we have a pickup in hours soon. In the mean time I am doing what I can with him. Thankfully it is pretty easy for parents to learn and apply ABA techniques. It does take a lot of time and patience which I know is not as easy for some parents as it is others. For now I am doing what needs to be done. He is back in school now to so that helps.

School Has Begun

Here is Eric and Andy waiting for their buses to go to school. Eric's first day was Tuesday. I thought Andy's was too. The first bus comes and I ask if it's for Eric or Andy since Andy's came first last year, no it's for Eric. Andy was NOT happy with that answer. I had some stuff on the porch that Eric needed to take with that never made it on the bus. So I wait for another 15 to 20 min for Andy's bus. We had to go inside because Jon woke up, that didn't go over well either. Tried to call the bus company, stayed on hold for 10 minutes knowing I didn't have a prayer at getting through. I quickly dress Jon and pack him, Andy and Eric's stuff that was left behind and we were off. We got to Andy's school to find out he didn't start school until Thursday! Apparently it was in a letter I got. How could I get that wrong? Anyway I go take care of everything at Eric's school . I met his teacher, but she wasn't expecting to see me and I had 2 little kids with. I am not forming an opinion right now because of those reasons. We get home and I find the letter for Andy and sure enough it says the first day is Thursday September 3. Duh! I really need to start reading closer. He got off OK today. I was getting concerned about his bus when it was getting to be 10 min before his classes started. We live only 5 blocks away from the school so they got here 5 min before and were still on time. This time he was very good about waiting for his bus :-)

Eric is now in 2nd grade. He's in a self contained special ed class that specializes in children with cognitive and more extensive disabilities. There are kindergarten, 1st and 2nd grade students in this class. Initially he was supposed to have the same teacher all 3 years but she took a new job. Eric has a new teacher this year. He and I are slowly adjusting. She is saying it is taking some time to get him to listen to her. I have to get used to her communication system, it is much different and less detailed than his former teacher's. She did work as an ABA therapist while in college and taught a class that was all autistic children before. So this is really nice for Eric. I think it will just be a process of getting used to everyone and everything. Eric has the same para this year which helps.

Andy is starting his 2nd year of early childhood. This year it is actually Early Childhood/4K combined. There are 15 kids in the classroom, both special ed and regular ed. There is also 2 teachers, 1 special ed and 1 regular ed and 2 assistants. The school day is also 25 min longer, although it is still half day. He gets home about 11:15 am. There were no phone calls from there and no notes so I am assuming everything went smoothly. I don't know what is going to happen next year since he can't start kindergarten. He don't turn 5 until 9/27/10 so that is not going to meet the cutoff date. It will be nice for him to have the extra year. Their goal is to get him into the regular kindy classes at that school. As optimistic as I want to be I really don't see that happening. You never know, but still. He very well may be starting his ABA therapy sometime after the new year. The state is really moving with getting these kids off the wait list. That is great, but I hope there are therapists available to work with him since we are having problems with that for Eric. See a future post for more info on that. I am so behind on this, it will get here sometime.