Saturday, May 26, 2007

RDI Success Already!!

Today we went to Gainesville without Sophie to start learning which exercises to implement with Eli and we had an amazing day!

We got there, and while Eli played with one of the other consultants, we learned some things from our consultant about our strengths and weaknesses as individuals and as a couple. We talked about what we thought was really good about our personal styles, too. I think this really helped us when learning the exercises themselves.

Next, Tom learned a set of three exercises alone with our consultant, Angi. the first was just walking with Eli in a small obstacle course. The idea was that Tom would control the action of the walk and show with a big guesture how to get over or around any obstacles in the path. Next, Angi showed him a couple of other exercises. After Tom felt he had mastered what he should do with Eli, We brought him in. So, he did the obstacle course and it looked like (I was watching in another room) that it was hard to control Eli but that he was successful at the process in the end. The 2nd exercise was a push me pull me sort of thing with large facial expressions and noises. The third exercise was helping Eli put coins in a jar. The parent controls the action, while the child learns the patterns from the parent in each exercise. Once a pattern is established, we can do small variations in our zones of connection (how close we are holding him, etc).

So the beautiful part of this was during the coin exercise. The goal of these exercises is for Eli to learn to visually reference us for information on how to proceed. That is why we do noises and variations so that he learns to look at us when he needs information. So, Tom and he were putting the coins in teh container. Tom was holding Eli's hand and had Eli in his lap at first to establish the pattern. Then he put Eli in the chair next to him, and established the pattern again. Then Tom started making a noise or a facial gesture before Eli put the coin in. That would get Eli's attention and then Tom would "reward" him by saying 'You're Welcome!" very boldly and loudly. Eli LOVED this. So then he would get a coin, immediately look at Tom, and Tom would say "You're Welcome!" as soon as he did. watchign from the other room, I was CRYING with joy. It was beautiful to see Eli look for information from his father each time!! Angi was pretty close to crying too. Tom describes the process as a perfect moment in time. He got Eli to be the "apprentice" and the joy in all of us was indescribable. We KNOW Eli will be progressing now, we know that he can and wants to be a part of this master/apprentice relationship we are trying to establish. Amazing, I can't tell you.

After I calmed down (I really was crying my eyes out. I wish I had the video to show because it really was truly inspired and beautiful), it was my turn to learn a set of 3 activities to work on with Eli. I didn't have the success that Tom did, but I did establish patterns with him and have this next week to practice whenever we can fit it in (that is, when Sophie is either sleeping or distracted!). Tom will practice his, also. Our other activity is simply to go walking with Eli and share experiences along the way, or just have quiet time walking.

I have to say, I am loving feeling like we are doing something POSITIVE for Eli each and every day. We are teaching him and he is retraining us in a way to be better parents to him. We are learning to help him create his first real relationships in life, with his father and I.

The effect of this wonderful day, is we got home with a very happy child. He is bubbly, he ate somethign different tonight (Peanut butter on bread), he is finding ways to look at us for information, he is playing more with his father and I, and miracle of miracles, his sister! He tried to "show" her how to play his push down game with noises!!! She showed him that she loved him by giving kisses..

All in all, it was a miracle kind of day for us. It's great to have hope, and it's also great to have gotten started. We have a LONG road ahead, but that's OK, because now we know that we are doing a good thing for ourselves and our son.

What a GREAT day!

Thursday, May 24, 2007

It's been a while!

I have been driving myself crazy the last week with my little real estate obsession, which I think now that I know our credit situation, has safely passed. We really probably can't get a house right now without a really bad rate or something, so I'll stop worrying now and try to fix the credit instead. I had seen a house with a yard and tile floors that I was yearning for so much that I got caught up in the belief that we could have it no matter what. Realism has set in now!

I took this shot of Elijah today, it was his last day of the regular school year. I will have him at home with me for a few weeks before he goes back for summer sessions. I'm glad, because Saturday we finally get our first set of RDI exercises to start with Elijah and I'm excited that we'll be doing something.

I did discover after stopping the b12 injections that Eli became a lot quieter in the last few weeks. Last night I resumed the injections and today he's quite the vibrant little boy. He is talking more, he was out peddling his tricycle, and he's making lovely eye contact and referencing me a lot today. When he was peddling his tricycle, he kept looking at me, checking to see if I noticed what he was doing. So I did, Loudly! I saw visual referencing and a new skill being shown off, it was really great! He's been talking so much more today, saying interesting things. He was sitting on his bed earlier and he got his shoes off, and then his socks. He looked at me and said, "Scary". So I said, "Something is scary." and he said, "Monsters Scary". I said, "No monsters in our house". and He said, "Monsters scary, no monsters scary". I'm not sure what that meant, except he just wanted to let me know that monsters are scary, perhaps.

I just finished a fiction mystery that has a young autistic boy as a character. The novel is called Eye Contact by Cammie McGovern. It was a really difficult book for me to read. I admit I like to hold on to my hope that Elijah will lead as normal a life as he can. I like to hold on to possibilities and feel like I'll never give up. I want to believe with all my heart that things will improve dramatically over the next year. I do believe that. So, when I read books about children who are autistic and have done many therapies and none of them really did anything significant, I am prone to losing hope. Until today, when I realized the B12 shot DOES do something. It seems to make Eli more here with us. He is doing a lot of looking at me in particular, and he just now asked to go potty and sat there without me singing songs, just saying, "potty, potty". I'm very proud just now.

I also wonder if it's the changes I've been trying to make in my overall language/communication with Elijah. I am trying to shift from the constant imperatives, the questions and commands, to simply being declarative. For example, I don't ask if he wants to go outside, I just tell him I'm going outside and let him make his own choice. It seems to be helping both of us, because I don't feel like he has to answer me anymore, he just has to make his own choices and it is ok, because I'm not demanding or expecting anything. I think this is also helping him make more eye contact so he can try to figure out from my face what I might actually want.

He is a very sweet fellow. I can't wait until Saturday when we can truly embark on our RDI lifestyle! I hope we do find a great house someday in Gainesville, it's just going to be a while, maybe another year while we work to repair our credit, maybe only a few months, who knows. Meanwhile, I will spend my summer break with Elijah, learning to help him, caring for him, and just generally being his mother, which teaches me more about life than I ever expected.

Tuesday, May 15, 2007

The Flu found us..ugh..

Well, mostly the flu found me.

Sunday we went to see the Lippizanner Stallions perform at the Jacksonville Equestrian Center, a benefit for the hippotherapy place we love so much. Anyway, as we were sitting there, I thought I was having a weird sensory reaction to the lighting in the place. When we left I had a tremendous headache and neck ache and couldn't wait to get home and get some medicine. We got home, I got some medicine, and I just felt icky and achy most of the evening, then developed a fever. The fever got very high and I had a rough night. Eli also had a rough night, though his fever was low grade so he didn't get medicated.

All day yesterday I couldn't get the fever below 100.4 degrees even with Advil. I felt awful and I kept the kids home thinking they would probably get it too. Eli continued to be slightly feverish but nothing else wrong and Sophie was somewhat lethargic but no fever. After Tom got home I went to sleep for a while and woke up with a spiking went up to at least 102 (that's when I had to take the thermometer out of my mouth and cough) and I decided to get in the bath. I almost never get high fevers so I felt pretty darn bad. The bath and the advil got the fever back down to 100 or so and I managed to sleep pretty heavily last night. This morning I'm sweaty, but NO fever, thank heavens. I still feel nasty and tired and achy and my throat hurts a bit, but the high fever is broken for good, I hope.

Anyway, because of the fever, I'm calling it a flu bug and not a cold bug. Today i'm going to keep Eli home from school since he still feels warm in his sleep and we'll see about therapies. I want us all to be better by friday for RDI stuff.

That's all for today..the simple act of sitting here has exhausted me!

Saturday, May 12, 2007

Lazy Saturday Morning

Not a lot going on in the last few days, so I didn't bother to post. Biggest news is Alexis is not moving home, at least not for a while. I'm pretty sure not for a long time. She has a new boy, which I knew was the case, and I confirmed it yesterday. You can never tell a child, especially an adult child, what is best for them and expect them to listen. I don't expect anything now, I just want her to be happy as I always do. I'm sad she won't be around where people who love her will always be here for her, but at 20 she has to live her own life, and that's OK.

Otherwise, we're just going day by day as we always do. Tom is at an RDI seminar this morning in Gainesville and I miss having him around today. I look forward to weekends when I'm not the only parent in the house dealing with all the stuff. I look forward to being out and about, even if it's only to a park or grocery store. I really just love spending time together with my husband. I hope he knows that!

I feel restless and unstructured today and don't know what to do. I have been house shopping, for rentals and buys and I am still so conflicted as to where to live. In some sense, I want a permanent home with a yard for the kids to play in, and in others I'm afraid to settle for one house in case after a couple of years I don't like it. That's what happened in Atlanta, I think as a result of Tom's unhappiness and just realizing the house had features I wanted missing from it. I really don't want carpet, for example, and while our yard there was really pretty, it was fairly useless as a place for the kids to play in whenever they wanted. So, I have only 2 real requirements in a home now..non-carpeted living areas (the bedrooms can be carpeted), and a fenced in yard. The yard doesn't have to be big, just enough for kids to have a play space that they can be in anytime. It would be a plus to have a screened in porch, or a really nice covered deck, too, but not as necessary as the other two things are. Yesterday I also figured out I want more than 1 bathroom. After that it's just where to live! I'm conflicted between south of here in Clay county, Green Cove Springs. Or Gainesville, which is a progressive college town. I just can't decide what is better for all of us right now. I need some more information about the schools in Gainesville I think, but don't really know where to get it.

Well, that's all for now. Eli has just woken Sophie..I don't think she feels well today :(

Wednesday, May 9, 2007

Smoke and Rain

I finally managed to get up and get Eli off to school this morning. It was very smoky and rainy out all day today and I don't cope well with cloudy yukky smelly days at all.

Today I discovered! What a cool website for learning the alphabet and all the sounds..Sophie is doing her usual learn it extremely fast routine, while Eli just watches in fascination. I'm going to use this with both kids as a sort of at home summer curriculum with the idea of just learning some fun stuff, but hoping that they will absorb it, too.

While I have been writing here, Eli is very frustrated with me because I'm not getting him a cookie. He has used gestures and the word "cookie" but I know he can say the sentence, "I want a cookie" so I am waiting for that to be said rather than get up and run get him a cookie. It's funny, every few days he decides to see what he can get away without saying. I have to stay vigilant and make him keep using words. I know it's hard for both of us, but it's really important.

Starting with a new playgroup tomorrow..if it's successful for me and the kids, I'm totally reconsidering moving to Gainesville, as much as I like it there. Sophie needs kids to play with or I'll have to put her in preschool to get her social time. As it is, I'd like to keep home educating her and give her plenty of play opportunities with other kids. We'll see. She's so smart I feel like we can accomplish a lot of learning that they might not do in a normal preschool setting, yk? On the other hand, she's also very social and needs time to be with other kids.

Today at the store she decided to tickle Eli..he actually liked it but in normal 2 year old fashion, Sophie went overboard and Eli wanted her to stop. It was a good trip though..they sat next to eachother in a special cart and did very well for the most part.

Not much else to say today..I'm being really lazy and not doing chores that I know I need to be doing and I am just plain tired, too.

Tuesday, May 8, 2007

The IEP and other stuff..

So yesterday we had the IEP meeting at Eli's school. They seemed surprised that my husband would want to come and be involved in that process. In all honesty, the meeting went very well. The teacher seemed to anticipate anything I might have asked for and wrote it into the goals already. Everyone agreed that he needed at least another year with his current teacher with the goal of moving him into short periods of inclusion classes throughout the next school year. He is still a pre-k kid so that works ok for me. I am hoping he will make it to kindergarden on time, but probably he won't make it to a regular classroom for a while yet. That's ok. I want to allow him to have the time to learn and grow that he needs. I'm just happy that his current school seems to agree with that.

The only problem with that is, that I am now very hesitant to move to another county since he is OK where he is. When you move you face uncertainty of placement and services all over again. We already have to pursue a florida diagnosis, which sort of irritates me. Why waste time and money (thankfully not ours) to get a diagnosis that he already has? I'll pursue it anyway since I can get it done for no money, but it just bugs me to have to go through that process again.

Yesterday we also had Hippotherapy again. Unfortunately, Eli fell asleep in the car on the way, which took extra time because it was rush hour. As we were driving, I could see plumes of smoke and clouds from some of the current massive brush fires in Bradford County, not far from where we live. It had an eerie sort of beauty to it, but it made me very afraid too. There are currently 210 fires in Florida, most of which are small, but some are quite large. Of course, north of us in GA they are dealing with even larger wildfires that have destroyed some 100,000 acres of land.

But I digress...I was going to say when we got to therapy, I woke Eli up and he was a major grump! Must take after me! I, of course, couldn't give him coffee and a good book so he could center himself, so he just fussed and cried for a while. His therapist let Sophie have a short ride, which was pretty cool. I have to remember to have a camera so if that ever happens again I get a picture! Anyway, Eli managed to get it together and got a half an hour of horse time after all that and did pretty well. Today he had regular OT and cut through a whole paper by himself with scissors! I am proud that he has learned to do that. I thought he didn't know how because he so far won't do it with me.

In other news, Eli continues to remove his diaper constantly, and training is still not really happening. It's very frustrating, honestly. I hope we get some progress on that front soon.
Also, Sophie has officially weaned off the breast. I am a little sad today, but I wanted it to happen so I'm also relieved that it finally has. She hasn't nursed since Friday. She asked to today but I offered her milk instead and she was just as happy to take that. Now I have to figure out how to get her to go to sleep without nursing!!

We also joined a new playgroup today. I hope I get to meet these folks on Thursday morning. :D

Sunday, May 6, 2007

Big Day Yesterday!

For starters..we got up early yesterday morning so we could get to Gainesville to meet some of Tom's friends and then to the first part of Eli's RDA evaluation. Eli got himself up in the morning, and much to my surprise, he came out to the living room walking funny. He'd apparantly put his own shorts on but put both feet in one leg of the shorts which was pretty cute. I figured I'd better check otu the diaper situation and get him dressed for the day. I take off his diaper and there is poop on his butt but not on the diaper! I am baffled so I look around and notice a dirty, poopy diaper on the floor..thankfully not spread around. Apparantly, Eli woke up poopy and decided to change his own diaper!!! AMAZING!! Not only that, he tried to get his shorts on afterward! I was so proud of him! I have been doing bunker potty training and trying to at least catch something by taking him every half hour so we are at least getting somewhere.

After we got it all together, we headed for Gainesville a little later than we'd anticipated, and got to Tom's work friend Tim's home for lunch. I really enjoyed our time with Tim, Lynne, and their 3 kids. They have a lovely home and a great yard for kids! Eli and Sophie had a great time on their playset and just enjoyed it tremendously. It was a great warm up for what was coming next, the RDA evaluation process.

So, we got to the RDI offices and first they had Tom go into the playroom with Eli alone and help him get comfortable and play with him for about 10 minutes or so. Meanwhile, we waited in the office. Sophie was fascinated by her Daddy being on the TV screen and also knew her daddy was in the other room and tried to get to him. It was sort of hard on her, but the psychologist was amazed at her totally knowing where her father was. After 10 minutes of play, Tom and Sophie left for a while and went for a walk, while Eli and I worked together on several exercises, probably about 10 all together. It was really great. Eli did great and we had so much fun with one exercise, falling onto a load of bean bags, that he actually looked up at me and said, "That was FUN!". It was pretty tiring too, so when we got done, we set up scheduling for the next couple of sessions of RDA evaluation stuff, and headed out.

After some food and relaxation, we went to Orlando to meet up with my stepfather and his kids and my aunt and cousin. It was a really nice family gathering at my parent's timeshare place, a gorgeous 3 bedroom home with a personal pool/hottub setup. The kids had a blast and really enjoyed seeing their aunts, uncles, grandfather and cousins! It was so nice to see everyone, and it was especially gratifying for me to hear that they all thought Eli had improved a ton since the last time they saw him. Even my stepfather thought Eli had come a long way since he'd seen him in February. I knew Eli was making progress, but for me it's a day to day thing where I see all the ups and all the downs and not a big picture. It felt good to know that he's doing well from others' perspectives!

We had such a busy day that today we're pretty much just taking it easy and hanging around at home and relaxing. Tomorrow morning is Eli's IEP meeting so there's a lot to deal with then. I'll write that stuff up tomorrow. Meanwhile, back to a relaxing sunday after a great saturday!

Thursday, May 3, 2007

Nice Quiet Day at Home

We're taking it easy today, not doing a whole lot. Just hanging out and being. Both kids are being little wonder children today, they must sense my need to process and be quiet.

I wanted to address some of my family who seem concerned about some of the posts sounding like I'm having a hard time of things. I'm really not. Each day is what it is and some days are hard and some are easy. That's just parenting. I've done my mourning over Eli's autism and I don't mourn anymore, I just simply love him.

I went through a hard time when Sophie was born and it was as though I let Tom become Eli's parent while I dealt with Sophie. It took a long time for me to come to the realization that I wasn't as connected with my son as I had wanted to be. I've worked long and hard on this now that Sophie is bigger, and I feel even more connected to him than ever now. He plays with me, he looks for my company, he comes for cuddles and love and tickles. And now when I come to school to get him, he comes running for me. On the way home yesterday he chanted, "mommy, mommy" in the car. He knows me again. For the longest time he only said Daddy, because he only had 1 parent while I learned to have 2 children again. Now he has 2 parents and says both Mommy and Daddy. It's a wonderful thing. I refuse to be guilty. All parents are only the best parents they know how to be at any given time. We are human and we make mistakes, and then later we laugh at them. On the flip side, Tom has had time to be very connected to Sophie and the blossoming father daughter relationship is joyous to watch and see. She looks so much like him!

We are a happy family who has ups and downs and is still learning to fly. We laugh, we cry, we sing and we make mistakes and we fix them. I love us :D

Wednesday, May 2, 2007

Finished the book..

Making Peace with Autism was a really good book, I was filled with ups and downs and spent every minute reading it processing how I feel about autism and my son over and over again. Our sons are not similar..autism comes in many forms, it's a spectrum disorder because like children, each manifestation of the disorder is different.

Elijah is going to be a wonderful person, and is now a wonderful person. I think that is why reading this book was good and bad. I was filled with hope for my son, but also filled with fear that if I don't fight hard enough, he won't get what he needs.

I feel like I'm so very lucky to be his mother, to have a chance to love this special, unique little boy.

In other news...I don't know for sure, but I think we might move to Gainesville this fall. I'm finding myself somewhat uncomfortable with the area we are in now and hope that a change will be good for our family. Tom is still wanting to find people with more in common and he knows people from work that live there that he will travel with. I like the idea of living in a college town with more progressive views and stores and fun places for the kids. We shall see. We will only rent so if we change our minds it's only a year.

Otherwise, we're having a nice, slow day. Last night the children both fell asleep around 7 and didn't get up until 8am this morning. It was amazing. I don't expect it to happen again!!

Tuesday, May 1, 2007

A very sweet moment

today I turned off the TV all afternoon and played with my kids. We read books, we rough housed, and we played games...

In the middle of rough-housing, I pretended to be hurt and cried...Eli reached with his sweet little hands and an expression of concern and touched my was so sweet I wanted to really cry then and there..! Such a fun and lovely boy..

Ramblings and Hippotherapy..

So here we are again, a fine Tuesday morning and Sophie is still sleeping in, so I thought I would review our afternoon yesterday.
1st Eli is in the midst of evaluations at school because next week is his IEP meeting and we are all getting ready to fight for what he needs. The schools in Florida are a little behind the times, just now learning to update their definitions of autism to include autism spectrum disorders like Eli's PDD-NOS as an autism thing and not just a developmental delay and language impairment like they have him classed now. The difference may not be plain to everyone, but it makes a difference so that he can get the appropriate classroom needs met. He still needs a lot of work and we need to fight for a lot. Florida is not known for great school services, unfortunately, and they also plan to cut funding to the disabilites department so that less children will get what they need. In this age of 1 in 150 children diagnosed with Autism, that is downright insane. More families will need more help in the coming years, not less. It's particularly hard for those of us who are known as "middle class", since we don't qualify for medicaid or state insurance, but we still don't have insurance companies covering enough of the things that autistic children need for treatment, and it's not like middle class folks make enough money to finance everything without incurring a ton of debt. Of course, this country thrives on debt.

But enough of my high horse..let's talk about Eli's horse!! His name is Jiggy and he's more of a pony for the smaller guys. Every week, Eli goes to Hope Therapy (, and rides Jiggy while recieving some occupational therapy atop the horse. He learns how to sit in good posture, how to direct his horse, and plays some motor skill strengthening games. There is a picture of this at the top. He loves this part of his therapy program. I'm excited to have him riding, as it was one of my childhood joys, too.

Back to reading. I am reading Susan Senator's Making Peace with Autism right now and while I've just started, it's helping me explore some emotions and thoughts that I had felt I'd already processed. I wonder if you can ever fully process the emotions you feel when you have a child with a special uniqueness like Autism. I'm not sure you can. So right now I'm only at the beginning but it makes me think a lot about Eli's infancy and wondering if I missed some signs back then that things weren't perfect. I believe in the individuality of all of us, so I think many times I chalked up his quirkiness as being himself. How would I have known otherwise? No one expects autism and starts looking for it from birth unless they've already got reason to be suspicious. No, we thought he was introverted and terribly gifted, but never thought autism. Every so often we'd notice a strange sensory type thing about him, but nothing that would make you stand up and take notice and get help. For example, he used to enjoy touching everything he approached with his feet. He used to find the sound of cardboard ripping unbearable, too. Later on, I remember him being really sensitive about being in loud, flourescently lit places. In any case, I'm sure there will be more of my ramblings as I once again make my own peace with autism. Let me just say, I adore Eli. I can't wait to see what life brings him and us as his loving family, but I'm still going to do all I am able to do to help him grow up. That's what all parents do.

Ok..enough of my rambling for today. I'm off to crochet while I can.

In OTHER news..nearly forgot, Alexis is now coming to florida circa June 1st, and will be living with my Aunt Margie down in Orlando instead of by me. So long lots of help and babysitting..but hello a better time of things and lots of support for Alexis, which is what really matters in the end. Orlando is at least only 2 hours away! Way better than 3,000 miles for sure.
And that's enough for this morning!