Ryan and Natalie's World

Hello everyone !!!

2008-05-28T21:50:00.000-07:00

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

2008-04-08T17:25:00.000-07:00

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

2008-03-25T19:33:00.000-07:00

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

2008-03-21T14:18:00.000-07:00

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

2008-03-08T10:15:00.000-08:00

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 !!!

2008-02-14T23:25:00.000-08:00

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 !!!

2008-02-10T11:25:00.000-08:00

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 !!!

Ryan the swiper

2008-02-09T21:50:00.000-08:00

This morning, I was making Natalie her breakfast. Ryan had already had his and was playing in the living room. I put some fruit puffs on Nattie's high chair tray for her to try and pick up and eat. Then, I turned around and started to make her cereal and fruit. When I turned around to see how she was doing, the puffs were gone. I figured she had knocked them onto the floor, so I started to look around for them, with no success. I went back to making her breakfast, thinking I'd find them after feeding her, and put some more puffs on her tray. When I finished making her food and turned around to feed her, this is what I saw:

Ryan was like Swiper the fox on Dora the Explorer. He was so quiet about it too !!! I didn't even realize he was there. Ryan has not been interested in the fruit puffs for awhile, but now that his sister is starting to eat them, he also must have them. When Ryan realized that I had the camera and was snapping pictures, this was his reaction:

Too cute, I'm tellin' ya.

Shopping Trip

2008-02-09T15:20:00.000-08:00

I recently went on a shopping trip to pick up some things for the kids. Normally, I love going out shopping for them, but on this particular day, something I witnessed while in the store left me with a really sick feeling in my stomach.

There was a mother with her 3 children that passed me in the store and wound up the next aisle over from me. I guess the children were about 5 or 6, 7 or 8, and 9 or 10. The oldest one was a girl and the 2 younger ones were boys. This woman was screaming at her children, especially the youngest boy. Now, I fully realize that being a parent can be very frustrating sometimes. There have been times when feeling like I was at "the end of my rope" in a situation, I have had to walk away and cool off for a few moments. I have had moments of total exasperation that I have begged and pleaded with my children, almost to the point of tears, to just "please cooperate with Mommy." Come on now, I mean... what parent has not felt like this at one point or another (I'm just talking about the walking away & cooling off and the begging & pleading).

This woman was just plain mean and in my opinion, does not deserve to be a parent. She was calling her children stupid. Several times, she threatened that "someone was going to call the police on them". She repeatedly told them to shut up. She was swearing at them. I could not believe what I was hearing. When I walked past the aisle they were down, she grabbed the youngest boy by the collar of his jacket and began to drag him down the aisle. The little boy was crying and was looking at me as I passed. I just wanted to scoop him up and hold him, hug him, and tell him that everything was going to be alright.

I'm not sure that words can adequately describe how I felt that day. Now mind you, I was not the only one who was appalled by this woman's behavior. Several other shoppers had looks of disgust on their faces. A couple of women shook their heads. One woman looked at me and said "I can't believe that." I was so bothered by what I heard and saw that I spoke to the store manager. His response was not what I expected it would be. He told me that "we don't like to get involved in people's parenting styles." You have got to be kidding me !!! This woman's behavior was at the least, disruptive and upsetting to not only myself, but also other customers. To me, her behavior was borderline abusive if not more. I was so upset when I got in my car, I called my husband and cried. When I got home, we discussed the situation further and John suggested that I should have called the police of the city I was in while shopping. If I ever find myself in a situation like this again, and I hope to god that I don't, that is exactly what I will do. Never again will I go to the store manager.

I've been thinking about this incident and wonder if there is more that I could have done. Should I have tried to talk to the woman ? Should I have tried to console the little boy ? Should I have called the police ? Am I wrong for thinking what happened was horrible ? Any thoughts, input, or comments that anyone has would be very appreciated.

Sibling love

2008-01-30T12:55:00.000-08:00

It's times like this when we really see all of the Early Intervention pay off. Ryan has not only accepted his sister, but loves her. I was laughing and crying at the same time while taking this picture. Yeah, I know, they won't act like this towards each other all of the time. They'll have their moments of fighting and being mad at each other as all siblings do. It's moments like this though that we see what tremendous progress Ryan has made. It's moments like this that we will forever treasure.

Please watch this video

2008-01-24T13:05:00.000-08:00

A friend of mine forwarded this to me (Thanks Chris !!!) and it was also posted on a blog that I frequently visit (Thanks Day !!!). Family, friends, and all who view my blog, PLEASE watch this video. Each time you watch it, 49 cents is donated to Autism Speaks. This is very generously being done by the band Five For Fighting. They are looking to get 10, 000 hits, but hopefully we can assist them in getting many more than that. Pass this link along to others also. By all of us working together, maybe someday we can "solve the puzzle". Click on the link below to view the video:

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

The Beginning

2008-01-20T13:30:00.000-08:00

I have been thinking a lot about what I wanted to put in this post, so I guess I should just start at the beginning.

My Husband John and I had been trying to start a family since we had gotten married in 2003. After about a year and a half of trying, we started fertility treatments. On our third cycle, we got the best news you could ask for...I was pregnant. I had a few times during my pregnancy that things got a little tough, but got through them okay. Ryan Joshua was born in September 2005 and we were elated. Finally...our very own family.

Ryan was a very easy going, laid back baby. He was very happy pretty much all of the time and well, was just an exceptionally good baby. Looking back on it now, it seems like he may have been too good and that maybe that was the start of this journey for us.

When Ryan was about 6 months old, I started to notice some "quirky" little habits. He would do a backwards hand wave. Sometimes he would flap his hands like a bird. His hands were extremely sensitive. Having worked with autistic folks in the past, I made a mental note to myself that we needed to keep an eye on him, but tried to dismiss that anything could be wrong with our child. When Ryan was about 8 to 9 months old, he started to have some jerking and twitching episodes. Since there is a past history of seizures in my family, his Pediatrician referred Ryan to a Neurologist. After 2 normal EEG's and a normal MRI, we thought we were in the clear and that the worst was over. Little did I know that our journey had just begun.

At 12 to 13 months, Ryan had no interest in self feeding. He refused to pick up a sippy cup and refused to drink from one. He would not let you touch his hands at all and seemed bothered by everyday items (toys, food, etc...) touching his hands. He had very little speech. He seemed bothered by loud noises, especially crowded places. He had very little interest in other children.
Ryan was still a happy little guy, but it was obvious that something was going on. Again I thought autism, but tried to dismiss it.

We got a referral for Early Intervention. He was evaluated and qualified for services. Shortly after he began with them, we found out that I was pregnant again. John and I were very excited that Ryan would be having a brother or sister. After about 2 months of services, EI felt that Ryan was in need of some additional assistance, so he was evaluated by Building Blocks Intensive Early Intervention. He also qualified for these services. When he was evaluated by BB, it was the first time I had heard the term PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified). The person who evaluated him was kind of "on the fence" about whether he had it or not. Ryan's Neurologist was of the same opinion. John and I needed some definitive answers as to what was going on with our son. For most of the time we were having him tested and evaluated I was pregnant with my daughter. It was another bumpy pregnancy and being "stressed out" about my poor son didn't help matters any.

In July 2007, I gave birth to a beautiful daughter, Natalie Grace. John and I were thrilled. Ryan, well that was a different story. He was quite upset about his sister and wanted NOTHING to do with her. I mean, after all, he had been the "king of the castle" for almost 2 years. Now he had to share Mommy and Daddy with someone else.

Natalie was a different baby from Ryan right from the start. Where Ryan had been patient, she was impatient. Where Ryan had been quiet, she was quite loud. Where Ryan had been complacent, she was not. Where Ryan had been happy practically all of the time, Natalie was a bit harder to please. In other words, Natalie acted like a "typical" baby. At first Ryan was really pissed about Natalie being in his house, but he has adjusted quite well and seems to love his sister very much now.

In August 2007, we had a comprehensive evaluation done on Ryan at Boston Childrens' Hospital through the Developmental Medicine Department. It was 2 part evaluation, and then we returned a third time to discuss the findings with the Doctor. Again PDDNOS was mentioned, but that whole conversation seems like just a blur to me. Natalie was only a month old at the time and wasn't sleeping very well, so I don't really remember a lot about that day. I guess when it really sunk in for us that Ryan definitely has PDDNOS is when we received the report in the mail and saw it in black and white. It hit us like a ton of bricks, especially John. I had been kind of preparing myself for the fact that he had some form of autism. It was still hard to read that report though and see it in print. I'll be honest with you, reading that report was one of the hardest and most heartbreaking things I have ever done in my life. My heart, as well as my husband's, broke. Not for ourselves, but for our precious son. You may ask, what do you do after experiencing something like this ? You have a good cry and then you pick up the pieces. You pull yourself together and you press on for your child. You advocate for your child and you push for all of the services that you can get for them. You find a way to be happy, experience joy, and laugh again.

That's where we are at right now. Ryan currently receives a total of 23 service hours per week between EI and BB. He is doing very well, but has a long road ahead of him. We are now gearing up to start the whole pre-school process for him. Natalie is doing well and has turned into a happy little girl. She loves to laugh and play. She is quite vocal about what she wants and likes to be entertained all of the time. We are keeping a close eye on her, hoping and praying that autism does not afflict her also. I worry a great deal about it, as I am sure my husband does. We continue to be a strong family and hope the best for the future of both of our children.

I can't say enough about our families and friends. You all have been, and continue to be, a huge support system for us. We can not thank you or love you enough.

Sorry about the length of this post, just thought it might be useful for people reading to know the history behind this blog. I promise not to write a novel in the future.

First post

2008-01-15T19:57:00.000-08:00

Hi everyone:

This is my first attempt at a blog...so please bear with me, this is a learning process for me. I am just looking for a way to keep family and friends updated as to what's going on with Ryan and Natalie. As I become more confident and learn more about blogging, my posts will become much better and the blog will have a much more organized look.

Welcome to Ryan and Natalie's world.