Hello everyone !!!

Hi everybody...I know, it's been awhile since my last post and I do apologize for that. It has been non-stop craziness around here. Lots of Early Intervention, colds, allergies, Doctor appointments, and so on. I've also been trying to squeeze in some work on the weekends for a little extra money. We had Ryan's IEP meeting and it went okay. Not great, not horrible...just okay. He did get a full day program, but will start off the school year with NO integrated classroom time.. Ryan will be spending the entire day in a DS (Developmental Support) room. We will meet with the school 2 weeks after the school year starts to discuss whether he is ready at that point for any integrated class time. Then we'll meet again at 4 weeks. After that, I will either meet with or call his teacher every week to see if he is ready. We DO NOT want even 1 week going by that Ryan is ready to be in an integrated classroom and he is not in one...at least for part of the day. Ryan also did not receive as much speech therapy as John and I (and also the EI folks) would liked to have seen. He also will not be getting any pull out OT services to start off the year. Ryan has not even started school yet, and I just feel like we are facing an uphill battle. It looks like we are going to have to fight tooth and nail to get him that services that he so desperately needs. It makes me feel so helpless and angry. Why does it have to be this way ? I don't get it folks...I really don't. Anyways, talking about this gets me all worked up, so I'm going to change the subject.

Ryan continues to make progress with EI and BB (Building Blocks). Most of the time, he's much better about being able to communicate his wants and needs. However, we have been seeing more self stimulatory behavior (mostly hand flapping and humming) from him. As a parent, this is truly heartbreaking to see. He'll get into this "zone" with the hand flapping and humming and is in his own little world. He can be re-directed at times, but it requires some effort. Sometimes a lot, sometimes a little...it just depends on his mood.

On a positive note, we recently purchased a nice swing set for Ryan and Natalie. They both LOVE IT and love being outside in general. Ryan really enjoys climbing up the ladder and going down the slide. Both Ryan and Natalie enjoy the swings also. Ryan is just so happy when he is outside and on the swing set. It brings John and myself a great deal of joy to see him as happy as he is when he is playing on it. He seems to smile, laugh, communicate, and interact so much more during these times. He actually cries and has a fit when it's time to go inside. Ryan also loves animals, especially dogs and rabbits. This is another instance where we see his communication skills really increase. We have been really trying to maximize his outdoor time and exposure to animals, as we feel that this is of great benefit to him. One of our favorite family activities is to take Ryan and Natalie here. Best of all, it's free...unless, of course, you wind up adopting a pet !!!

Natalie is doing well and continues to be, well...Natalie. She is as chatty and noisy as ever. Her favorite word is "Hi" and her favorite thing to do is to wave as she is saying it. She also loves to say "yeah" and clap while she is saying it. She is crawling, preferring to use the commando (army style) of crawling. She is trying to stand on her own and will hang on to things when someone assists her in standing up. Natalie is a very social little girl who is always smiling and laughing. She's eating mostly regular food now, and we are just trying to use up the last of the baby food.

So that's what has been going on around here. I'll try to post some updated pictures of the kids and the new swing set in the next couple of days. Hugs and kisses to all !!!

Ryan's IEP

We had Ryan's IEP (Individualized Education Plan) meeting for pre-school on April 1st. It went okay, but not as well as I had hoped. At the beginning of the meeting, the Director of Special Education at the pre-school Ryan will be attending in September made what I will, at the moment, call an "interesting" comment. I won't get into details right now...that's another story for another day. We did not get everything we wanted in terms of services for Ryan. He did get a full day placement, but will be spending all day in a DS (Developmental Specialty) classroom. It still hurts to say (and write) that. I never imagined having a child with special needs, but here we are, and we have to deal with it. Ryan has been progressing so well with all of his Early Intervention that we really hoped he would be able to spend at least some time in an integrated classroom right away. I pushed and fought for my son, but this was one issue that the school system would not bend on. We will meet 2 weeks after school begins to determine whether he is ready to spend any time in the integrated class. We will meet again 4 weeks after school begins to discuss if he will receive any additional OT or Speech/Language services (they did not give him much to start the year off with) and we will again discuss integrated classroom time. After that ? I will meet with his DS classroom teacher every week if I have to, and requested that this be put in Ryan's IEP. John and I do not want even one week going by that he is ready for an integrated class (not to sound like a broken record or anything !) and not in one for at least some of the day. So... in order to get what my son needs, I will be a pain in the ass if I have to.

The amount of support we recieived from the folks at Early Intervention and Building Blocks was just absolutely phenomenal. Practically all of his providers were at his IEP meeting. Thinking about it still chokes me up. Ryan is very lucky (and so are John and I) to have such wonderful, caring people in his life. It's going to be really difficult to say goodbye to them when he turns 3 in September and we wish we could hold on to them forever. They have given us our little boy back. They have helped Ryan come out of his private world and silence to join the rest of the world. We are forever greatful to all of them.

Bad Day

Anyone who has a child with Autism, or for that matter, any disability or illness will tell you that every once in a while, you have a bad day. A day when you just want to stay in bed and throw the covers over your head. A day when you hurt so much for your child and what is going on with them, that you just want to cry and cry and cry. Today was one of those days for me. Now, before anyone gets to thinking that I'm feeling sorry for myself, let me set the record straight. It's never about me....It's about Ryan. He is such a sweet, lovable little boy and it just rips my heart out when he has trouble with things that "typical" 2 year olds can do. Communication is probably the area where we notice it the most. Ryan has trouble communicating his wants, needs, and preferences some times more than others. As a result, he tends to get frustrated very easily. Staying positive about things one hundred percent of the time is very difficult. I guess the biggest issue that I worry about is Ryan's future. I realize that he is only 2 and 1/2 and that I probably should not be pondering these issues at the moment...but I wonder about things sometimes. Will Ryan continue to make progress ? Will he be able to make the transition from Early Intervention and Building Blocks to the public school system ? Will the services he receives in school be enough for him to continue to make progress ?
I sometimes even worry about the long term future such as whether he will go to college, find love, get married, and other things that I realize I shouldn't be worrying about at this point.

I'm only human folks, and just not having a good day today thinking about all of these "what ifs".

Tomorrow is another day and hopefully my attitude will be better. Sorry to be such a downer, but sometimes, you just gotta let it out.

Setbacks and progress

So, I thought that Ryan and Nattie were over their nasty colds. I thoroughly cleaned the humidifiers and packed them away in the closet. The day after I did this, their colds came back with a vengeance. Back out came the humidifiers, vapor bath, and baby rub. Oh well...at least now it seems like they are at the tail end of things. One can only hope at least.

On a brighter note, the amount of progress that Ryan has made over the past 6 weeks is nothing short of amazing. His language especially has exploded. He says a lot more single words than he was and even has a handful of 2 to 3 word phrases that he uses on a fairly consistent basis. Ryan also seems to be a lot more focused at times. He is jumping now. His hand sensitivity seems a bit less frequent than before. He's playing with his peers more. Ryan has made significant gains over the past 6 weeks and still has a long road ahead of him, but progress is good.

John and I brought Ryan back to Children's Hospital recently for a follow up to his evaluation that was done in July. The Doctor noted marked improvement in several areas. Overall, he's now functioning in the 20 to 22 month old range. She recommends that we continue with all of the services that he currently receives through Early Intervention and Building Blocks. The Doctor is also recommending a full day integrated pre-school program for Ryan when he turns 3 in September. The city that we live in does not have a full day integrated program, only a half day integrated program. John and I will push for Ryan to spend the maximum amount of time in the integrated classroom, as we believe this will greatly benefit him.

We are just getting started with all of the evaluations and assessments that need to be completed in order for Ryan to attend pre-school. It's a long, tiring process and we are very nervous about it. Going from Early Intervention to the public school system, well....it's an entirely different world. My husband and I will push for an all day program for Ryan. This means that he will likely spend a half day in an integrated classroom and a half day in a DS (Developmental Specialty or Services...I'm not sure what the proper name is) classroom. From what I understand, the main difference between the integrated and DS classroom is the level of support. An integrated classroom may tend to have more children that need less support. A DS classroom would tend to have less children that need more support. We would like for Ryan to receive the maximum amount of services that he can. Between Early Intervention and Building Blocks, Ryan currently receives about 23 hours per week in services. John and I believe that in order for Ryan to continue to make progress, he'll need something comparable from the public school system. We will do all that we can to make that happen for our son. Right now, we're just trying to take it day by day, meeting by meeting. We'll advocate for him as much as we can and will push for everything we can get for him. As Ryan's parents, we feel that these are the best gifts that we could ever give him.

Quiet

Hey, I know folks...I've been real quiet. Lots going on around here. Both of the kids and myself had pretty nasty colds for a couple of weeks and were feeling, well, just plain tired and crappy. After getting over that, we have just begun to start up with the pre-school process for Ryan. It's been non stop evaluations, assessments, and meetings, and we are just getting started !!! Throw in some medical appointments and a husband with a somewhat unpredictable work schedule at the moment and voila...you have a few weeks of not really having the time or energy to blog. I have lots to talk about though in regards to Ryan, this whole pre-school process, and some medical appointments that he has had. Stay tuned everyone !!!!

Happy Valentine's Day !!!

Happy Valentine's Day to all family, friends, and readers of this blog. Today is also myself and John's 5 year wedding anniversary. Unfortunately, John had to work during both the day and night. He did manage to get home for a couple of hours though to spend some time with us. We are still as much in love, and maybe even more, as the day we were married. I am a very lucky woman to have such a wonderful man as my husband and the father of my children. Even though we could not have dinner together, I cooked John a special meal to take back to work with him. Natalie got her first valentine, from Daddy of course !!! She really seemed to like the pink rose and card that he got her. She thought the card was especially delicious !!! Ryan was thrilled with his Backyardigans Valentine's Day card, monkey stickers, and Hershey's kisses from Mommy.

She did it !!!

I've only been giving Nattie the fruit puffs for a couple of days, but she already manages to pick them up and even gets a few in her mouth here and there. We are working on a sippy cup also and she seems real receptive to it. These are very encouraging signs to us. At this age Ryan had no interest in either. Even at 12 months old, he would not drink from a sippy cup or self feed. John and I are really excited to see her touching & exploring things, eating puffs, and drinking from the sippy cup (with assistance). It made our day !!!