Tuesday, January 26, 2010

The daily Routine

Sometimes I wonder if I am really doing him any good. I mean all I do is drive all over town for therapy and then drop off and pick up the other two kids from school. The good thing is that Chase has no choice but to be flexible. Is that good or bad for an autistic child? If we are home he just wants to stim off the musical spinning toys. So therapists say take them away. Okay sounds good but then what does he do other than climb everything in sight.

There are just not enough hours in the day nor hours in the week to do all that needs to be done for him or the other kids. So then I have a day that is a little selfish for myself like going running then I only feel guilty later that I did not work on Chases needs.

I toured a school for him for next year. It was awesome! So much hope yet so much that needs to get done before then. All kinds of questions arise. Is it good for the whole family? Liv and Austin will have to be uprooted from the area for Chase to be best served. The daily commute will be a chore. Yet he needs the daily interaction and pressures from the teachers. I have let him use me as a tool for his wants. Yet no one else understands his needs other than myself. That is not a good thing.

Can I protect him forever? What will others think of him down the road? He is so happy now will things become harder for him as he ventures out into the real world? It is so scray not knowing what the future brings yet trusting in the Lord to do what is best for him. And knowing that what will be, will be. As parents we can only guide so much and let the rest fall in the Lords hands. That is much easier said then done.

The seizures have started again and he is just starting to do so good. Hoping that is does not set him back. Is it because he is sick with post nasal drip and ear infection or is he off track? It is so scary to think the slightest thing causes a de-railing for him. Let's just pray that it is temporary for now!

Sunday, August 23, 2009

School starts for everyone!

Well I must say and am excited but nervous all in one. This summer has been a struggle for me trying to decided if I wanted to start homeschooling Austin this year. Eric wanted me to wait until 2nd or 3rd grade. But I was one the fence. That all changed after several weeks ago I drove myself to Mayo's ER thinking I was having a heart attack. To only find out it was probably only a panic attack. Then I realized I have been way over committed to all kinds of things and I was spending way too much time trying to figure out how to help Chase. Problem was I was spending all that time researching and hardly anytime actually doing.

We finally decided that Chase needs to be around kids his age with the help of his therapists trying to teach him to communicate and socialize. We did it! Week one was this past week and he came home everyday in a great mood and actually doing things that typical 2 year olds do. Like driving a car across the floor instead of just spinning the wheels or throwing it to hear it bounce. Then last night was awesome! We took the kids to Monkey Jungle to play (since our AC has ben out since Thursday ) while there Chase got a little overwhelmed but actually went into hysterics laughing with the popcorn game. It was incredible to see him laugh!!! Then he actually asked for more using a sign and reached for my hands to help him. HIS 1st attemp to communicate to mommy that he wants to play and have help. WOW!!!!

In the meantime I am trying to get the AC fixed tomorrow then I am taking a breather and try to get our life organized. All while praying that we are making the right decisions. That we are following the Lords words in every aspect of our lives.

Thursday, July 23, 2009

A day from you know where...

This has been one of those weeks that I wished my mother was still alive and here to help me out. Or at least that my sister lived in town. Today just tipped my bucket over. Layla our blonde dog got really sick over this week so I finally took her to the vet. After hundred of dollars in testing they are still not sure what is wrong with her. She is hooked up to IV getting a steroid and hydration. She is 9 years old and has been like a puppy for so long. Where do you draw the line? How far do you go in testing? She is like one of children yet she is a dog? Which brings me to our youngest Chase and all his testing.

Two weeks ago the Lord blessed us with an immediate opening into the CARD(Center for Autism Related Disorders clinic) which is normally a 9 month waiting or longer. I was not quite prepared since I only had a days notice thanks to my wonderful speech therapist. Once there we meet with Dr. Mae Barker who was absolutely amazing and accomadating. They proceeded to start the ADOS(Autism Diagnostic Observation Scale) on Chase. He was in such a great mood that day and actually doing things that we have not seen him do in the past. But after almost 2 hours of testing and meeting the genetics doctor who just happened to be in Jax from Gainesville for the day. They confirmed that Chase is Autistic. Yet they said they have never really met a child like Chase that is so happy that is of course unless you try to get him to do something functional. What does that mean? Still not sure except that we have started finally trying to communicate with him. He little brain is finally taking in some of this therapy we have been doing since October. We got the sign for eat the other day not prompted. Which sounds small but it is huge in his book.

We are now going to start using the picture system with him to try and get him to come to us and express his needs and wants. He is such a trooper considering that we have tried to maintain life with Austin and Liv and all there activities. We have cut back on a lot of things and I have unfortunately had to start saying no to certain activities. Chase is too much of a handful to go many places like the beach or a park that is not gated in compeletly. He is a runner and boy is he fast. And he does not understand that he could get hurt. It just does not compute in his little brain yet. So only time is going to work for him.

Thanks to all of you guys for being patient with us and not getting feelings hurt when we can not go somewhere or do something. It is just to hard with him right now and it causes me to have major stress attacks. I have already been in the ER once this month and even though it was not a bad experience there(the male nurse was a cutie, HeHe) I am trying to stay out of there.

Sunday, July 5, 2009

A week without daddy!

Well Eric left today for the week and of course spoiled Chase before he left. So I tried taking him to an Autism support group at Pump It Up which he usually loves but he was not having it today. Ever since the diary incident he has not been himself. This is when I wish we had family close by to help out. Or at least that my mother was still around to be there for me. I get so jealous sometimes that everyone around has all the help from family. I thank the Lord everyday that I have found such a close net of friends that I can call last minute for help.

The past few months I have kind of been in hide out because I am going through some denial and I realize that now. We are going to try hard to get back on track. Chase is such a trooper when I make him go with the flow.

Well he finally fell asleep which he has not been doing much of recently. Up at all hours again not sure why. Of course the few times he actually falls asleep for nap is when I have to wake him to get the other two kids somewhere. It is a never ending circle!

Saturday, July 4, 2009

Happy 4th of July

What a great holiday! Last night we took the kids to the local Suns game to watch fireworks at the end. Wow they love there fireworks!! Chase really liked them for the first 2-3 minutes then he became overwhelmed. He grabbed my head with death grip so we ran him to the car. Good trial run to see about us watching tonights from downtown. Guess I'll be taking Liva and Austin by myself.

It has been a crazy week and a half. Last Thursday I gave Chase what had been on of his safe foods out to eat. Within 30 minutes he started acting funny. I called a friend who looked it up and told me it now has diary in it. For several days he was just kind of spacey then real aggresive. Then this past week he finally broke out in hives all over his face and legs. He has been miserable with the itchys. Needless to say that cured my wanting to re-introduce him to diary and wheat products.

For several weeks I have been back and forth on should I try him on wheat or diary again. Personally I am so over this diet. Of course he has no clue what the difference is since he has always been diary free and gluten free for 2 months short of a year. But no one realizes how much work it is to make sure every little thing he touches or goes around does not have one of the off limit foods. Plus the expense is just insane. It is so hard for him to even be around other kids just in case they are snacking and he grabs soemthing from them. But after this episode I know that the Lord has given him to me to protect and that I can't complain anymore. So we will stick with our plan and move forward with caution.

Tuesday, June 9, 2009

What a great day!!

Today all three kids went to a Moms Day out until 3pm. I was not sure what to do with myself not having to take Chase to therapy or pick up kids at 2 different schools. Well I did find something to do. I went shopping!!! And to lunch with a good friend!!

Chase has not slept more than a few hours in teh past three days. Not napping either. Today he was really strange after I picked him up from Moms Day out so wondering if he got ahold of something he is not supposed to eat. Maybe I'll call teh preschool to ask in the morning.

Last week we went to the new neurologist down in Gainesville, FL. After waiting almost 3 hours to see him in the tiny little patient room with a not so patient toddler. He came in and said that Chase has "myoclonic epilepsy with a severe communication delays". At this moment he said that he did not appear to have Autism. He said several of his toddlers have these type of rare seizures at this age and he has found that they all are about a year and a half behind the average child. Which is about right because we are between a 6-9 month old level with communication still.

He also stated that recently a neuro up north has discovered that a small group of these kids have an abnormally low glucose level in the spinal cord which could drop with certain foods which then would cause the seizures to occur. So he said it was not unlikely that glutens could cause him to have the seizures. It is the first time a doctor did not make me feel crazy for saying that he goes into a seizure after having lets say saltine crackers. He wants to stay off anti-seizure meds for now and re-evaluate in 3 months. Apparently the seizure meds we were put on are the wrong type for his seziures and that is why he got worse. He does want us to run one more genetic test but it is 4K out of pocket so won't be doing that one for awhile as we are still paying off the last set of tests. I am just thankful that I followed my gut instinct and took him off.

The progress we have made in the past 3 weeks with our new in home speech therapist and our new occupational therapist have been huge. He still smiles at us but we are working on more eye contact when we are demanding him to do something. Whether it is asking for a snack which we are not there yet but close. He has played with a toy appropriately a few times this week. Which you would not think such a big deal but it is a huge milestone for him.

Thanks to all of you who have supported us through this year as it has been a tough one!

Friday, May 8, 2009

Another crazy week!

Finally everyone got better and back to school this week. Liv and Austin also started swim team. What was I thinking?? Poor Chase wants so bad to get into the pool with them. It is a torture for 30 minutes everyday for him. But the positive note is he is actually trying to tell me something with sounds and gets my attention by biting me. That is a huge step forward in teh fact that he knows he needs to get my attention to get what he wants. So know we just have to refocus the way he gets our attention.

We started a new in home speech therapist and I am going to love her. He really seemed to take to her this week. Wednesday we had our first seizure in over 10 weeks. So I was a little bummed. But it was only 3 small jerks seperated by hours. Much better than his clusters. He knew they were coming on because he came to me to hold him and was a different kind of whiny.

But all in all things just keep getting better. Or at least I can say that my praying for patience is being answered by him teaching me to develop my patience slowly.

Happy Mother's Day to all my mommy's out there!!!