Hello Again!

Hi Everyone! I know, I know, it has been ages since an update. It just seems like there is so much to write and it is so hard to put it all into words. Not to mention the fact that there is never enough time in the day! Things here are moving right along. Jack is in preschool now. He loved it the first 2 weeks and then hated it and now decided this week that he loves it! Lets hope that keeps up. He has a love interest there now so that may hold his attention- only problem is, it's his teacher! Things with Tom are complicated right now. From now on I will be posting updates on Tom's medical situation on the "Everything Autism" page rather than turning this page into a medical journal! I will post an update on there in the next few days. Adam and I are doing well, nothing new to report here. Just looking forward to Christmas. Rumor has it Santa may be coming down the chimney with a Wii!

An Update on Tom...

I am sorry I have been so neglectful at updating this blog. It seems that for a long time I had been putting off an update because I was always waiting for one more test to come back or one more appointment to pass so that I could give a more complete picture of what is going on with Tom. I am starting to think there may never be a perfect point so I decided now is as good a time as any to provide you an update. Things with Tom have escalated a lot in the past few months. He was formerly diagnosed with Tourette's Syndrome and his tics have actually gotten pretty bad. His behavior seemed to get worse right along with the tics. Things seemed to be quickly getting out of control for us. We had a visit to the PINT clinic at Froedert to have some Neuro-Psychology testing done. We received a lot of information about Tom and also some ideas about where to go from here. We were referred to a psychologist and met with her to discuss what we could do to make our lives more manageable. She felt that we needed a lot of help fast and referred us to a day treatment program at Roger's Memorial Hospital. Tom now goes to school in the morning and Roger's Memorial in the afternoon. He spends every afternoon working in both one on one therapy and group therapy. We will have family sessions once a week for as long as he continues. We have started to see some positive changes in him and have also been given a lot of information that allows us to better understand Tom and what he needs. Tom also has a doctor that meets with him and overseas things while he is at Roger's. Since Tom has been at Roger's they have confirmed the diagnosis of PDD-NOS and Tourette's Syndrome and also diagnosed him with ADHD and Anxiety Disorder. These terms had been thrown around a lot in the past and we expected the formal diagnosis. We started a medication last night that actually could treat all of Tom's ailments even the migraines and cyclical vomiting. If this works Tom should only have to be on one type of medication on a regular basis. It will take a month or so to see any results. If Tom has no major side effects from the medication and his EKG looks fine we will start some medication specifically for the tics next week. He will take this medication until we can get up to the full dosage of the other medication and until it begins to work. Treating the tics is a big priority right now because they are causing him a lot of problems at school and at times it is hard for him to feed himself because his head moves so much and he struggles to get to sleep every night.

Just a quick note...

For those of you interested in donating to our Dylan's Run team please feel free to use the following link to do so http://www.active.com/donate/dylansrun/theneibauers
I have been neglectful at writing I know! Busy Busy Busy! I will write an update soon I promise...

Some Very Very Good News...

As some of you may know we have been in the process of applying for the Children's Long Term Support for Autism. It has been a lot of paperwork and stress. Last week we had our home visit where they asked alot of questions about Tom and also gave us more paperwork to fill out. When we met with the doctors at the Wisconsin Early Autism Project (WEAP) they told us that though they felt like Tom was a perfect candidate for the intensive therapy that the waiver provides there was only a 50/50 chance that he would be approved. As I sat at the table with the county worker last week she explained exactly what we were getting ourselves into with the application. She said that during the intensive period of the waiver which would last anywhere from 1 year to three years that we would have a team of therapists in our home 40 hours a week. She said you need to understand that time alone with your family would likely be very limited, it is a very invasive program, your life truly would change. As I listened to her describe everything there was no doubt in my mind that I was willing to do whatever it takes. After she left I felt completely drained. As a mother my natural instinct is to focus on the good, talk about what he can do instead of what he cannot do. Numerous doctors and therapists had talked to us about this visit and how we would need to approach it. For over a year in fact we had been preparing for that one visit. Every word that came out of my mouth was weighed, considered and then reconsidered. The woman that we met with was very friendly and explained everything in very understandable terms, but still her job was to find something wrong with my son. As she left that afternoon I wanted to run after her and shout "wait a minute I didn't tell you about his art, or his vast knowledge of space, or how happy he can make you feel when he laughs" Instead I had told her about his struggles at the dinner table, his need to have me do all of the washing in the bath and all about his temper tantrums. It is true that there are many things that are difficult about Tom, but there are many wonderful things too. I want people to know that. The past week has gone by fairly slowly for me. Everyday I have thought about how the phone call that we are waiting for will change Tom's life. If he is not found functionally eligible for the waiver there are not a lot of options and if he is found eligible it would change his life forever. The doctors at WEAP have told us that with this therapy Tom would likely eventually be able to keep up with all of the kids at school in every subject, be able to make friends easily and best of all feel good about himself and his world. I tried to prepare myself for a denial, I figured that was the most pragmatic approach! We need this, we have to get approved. If we get denied there is nowhere else to turn. Those thoughts kept running through my head. This morning I checked the voicemail and there was a message from the county worker. The message said Tom had been found functionally eligible. My eyes filled with tears and I listened again. I listened to that message four times to be sure that my ears were not deceiving me. Tom has been found functionally eligible. The road will still be long, it will still be about 4 to 6 months before we are actually given a slot number and officially put on the waiting list. Then it will be at least an 18 month wait but more realistically more like 2 years until Tom will begin the intensive therapy. What we have starting immediately though is hope And it feels wonderful!

Time For Another Update...

Hi everyone! I hope everyone is doing well. It seems like just yesterday we were rushing to finish up our Christmas shopping and get ready for the new year and now we are looking forward to summer already! I can hardly believe that I left the bank almost 2 years ago!! Well anyways... Yesterday Tom went for an evaluation for occupational therapy. We will find out some time next week what their plan for treatment consists of exactly. Right now we are thinking that we will most likely go with therapy once a week. We applied for a grant today through the A.N.G.E.L. Autism Network to help cover the cost of some of the therapy. We will find out in a few weeks whether we are selected to receive one of the grants. We have our home visit scheduled later this month for the Autism Waiver through the county. It will take a few months to find out if we are approved for funding and then get on the waiting list. They told me from the date of the home visit we can hope to be on the waiting list in 6 months if approved. Once on the waiting list we will have to wait about 2 years before service is started. This is a very nerve wracking time because we have been told that even though Tom would benefit immensely from the therapy provided through the waiver there is only about a 50% chance that he will be approved. The whole process is complicated and long and a bit scary and if you get denied there are not many options because the insurance companies do not have to pay for much of anything. I now have first hand experience in dealing with all of this red tape and know why it is important to get some of the laws and processes changed regarding Autism. Anyways, I will keep everyone up to date as things progress.

It's about time...

Hi everyone! I thought it was about time for me to write a new post. It has been almost 2 months since my last one!!!

Not much new here really. I had a bad bout of Influenza A that ended with a double ear infection and sinus infection. The kids and I also suffered through pink eye. Now with all the sickness behind us we are more than ready for spring.

April is Autism awareness month. There should be a lot of interesting information in the news so keep your eyes peeled. I will be posting some things here or on the Everything Autism page throughout the month. Feel free to email me anything interesting you come across.

That is all I have for now. As the weather gets warmer and we get busier I am sure there will more to report and more pictures to share so keep checking back for updates.

It really is a Super Tuesday!!!!

The City Inspector came today for the basement. We Passed!!!!!!!! I am so relieved! Let's hope this is a sign of the Obama victory that will come later tonight!! Happy Super Tuesday! Happy Fat Tuesday! Happy Yay We Passed Inspection Tuesday!

Update

Even though it has not been too long since our last post, a lot has happened. We went to our appointment at WEAP (Wisconsin Early Autism Project) and Tom was diagnosed with PDD-NOS (Pervasive Development Disorder- Not Otherwise Specified) the doctor said that other than the speech delay it would be Asperger's but she could not dismiss the fact that he never started to speak on his own. Either way for now it doesn't matter much what you call it. She told us to continue to use the material that we are finding about Asperger's, as that will apply to him the most. We also finally got the results form the micro array back, that is the DNA test we had to determine if he has any sort of genetic disorder. The test came back positive. I was devastated by the news. I cannot explain why I took the news so hard, I guess because this could mean that more issues will arise in the future. It is also hard to think that only a couple of missing genes out of 30,000 have caused us so much heartache. The most disappointing news really was that so far they have not encountered any children with the exact same deletion so they do not know what to expect for the future. They were able to tell me that these genes operate the nervous system. More research is being done everyday with DNA and hopefully in the future we will learn more. We are having some additional tests done that may shed some more light on the DNA issue, I will update you about that when we here something. We had a meeting with the school this week. We will meet in a couple of weeks to create new goals for speech therapy for now. We will have to wait and see how things go and most likely will not get a full evaluation from the school until next school year. We will hopefully be starting occupational therapy with a private provider and also are looking into a few visits with a WEAP therapist, these are 100% self pay though so we would only go a few times in order to get some ideas on things we can work on at home. For now this will have to be enough. I have finally added our Christmas pictures so be sure to check them out. I also have been updating the Everything Autism section, so be sure to check that out (you will find the link on the side of this page), also within that section there are other places to click and I have been trying to update frequently.

Wait, wait, wait!

I would like to make a small clarification in regards to the post below this one about Obama. I would like to officially announce that I, Adam Neibauer am endorsing Barack Obama for 2008. I know that my endorsement carries much weight and is nothing to be dealt with lightly, therefore I chose to wait until TONIGHT to officially announce it. Everything before this very moment is mere heresay! Not that I don't support Hillary Clinton anymore, and I will certainly vote for her should she become the Democratic nominee ultimatley, but I do believe in what Barack is saying and think that we have the BEST chance for a new direction with Barack. Go Obama!

We are no longer a house divided...I won!!

I nearly forgot to share the most exciting Neibauer family news! Adam has finally come to his senses! We are now all on the same page! We are now Neibauers United for Barack Obama!!!!!

Time Flies...

Happy New Year...a week late! We have been so busy, it seems like only yesterday it was 4th of July! Things have been going well here. We are finally nearing the end of the work portion of our basement and all that will be left will be taking the previous owners to court and hopefully recovering the money that we spent to make the repairs. I for one will be happy when this whole thing is over! Adam has been enjoying his new job though the hours have been long. It is helpful that he is doing the job that I used to do so I understand what goes into it. I know that as much as he may want to leave at 5:00 or even 5:30 that a lot of times it is just not a realistic expectation. As things settle down hopefully he will be able to have a couple of days each week that he is able to leave on time. No matter how you look at it things are better for us now than they were a little over a year ago. When we were both working we all left the house at 6:45 and did not return home until around 6:30 or 6:45 each night! Now I get to stay home and have fun all day! Speaking of fun, Ben and Kami are really growing up! Kami is clearly not a baby anymore, she is a big girl now! She is very entertaining and really keeps me on my toes! She is getting to the age where she comes up with some very cute stuff! She is going to be a big sister in July and if you ask her where her mama's baby is she pats her tummy! Adorable! Ben changed practically overnight. He is getting around a lot, playing and being very interactive in general. He will definitely make sure I am getting my exercise that is for sure. It is so nice right now because Ben, Kami, Jack and I can all sit on the floor and play blocks together. Jack builds, Kami knocks down, and Ben and I laugh at them! That is all I have for now. Tomorrow we have our long awaited appointment at the Wisconsin Early Autism Project, I will let you know how it goes!