Thursday, August 27, 2009

Article Worth Reading and Tupperware

I, along with many IA parents, are concerned about how we can include the culture of our children into their daily lives. So I was thrilled to read about this very topic from the perspective of a woman, who was adopted as an infant from Taiwan.

Here is the article for anyone else who may be interested.

Now, what does this article have to do with Tupperware?

Nothing really. I just wanted to share the newest use of Tupperware in our house.

What a fashion statement!!

Sunday, August 23, 2009

Poses

First of all, I want all my blog buddies to know that I have been reading your blogs as I have time. I know I haven't left comments on most, but I'm celebrating with those who have recently passed court and will soon be leaving for Ethiopia to pick up their children; I'm sorry to hear that others of you are going through some rough patches right now; it's been wonderful to see how well the children who recently arrived home are doing; I've also have some blog friends who are adopting from the Democratic Republic of Congo and it's touching to know that more children will one day be meeting their new families; and as always, I enjoy seeing updated pictures of all the kids and families.

I'm going assume that all of you enjoy seeing updated pictures of Little Ms. Lili as well, so I'll share some that I took a couple days ago.

She is now starting to pose a bit for the photos and then wants to see the picture immediately after I take it. I'm not sure she can have a future in modeling if she refuses to pose again until after she's seen the picture that was just taken, but it's fun having her actually do some posing for her pictures.
The child loves her milk or mulk as she calls it.



She actually put her cup down for this one and this was how she wanted to pose for the picture. I guess this is her pouty look.

And every portfolio has to have a close up. How cute is she?

Friday, August 21, 2009

Training Complete

I've spent so much time filling everyone in on Ryan that I've neglected my posts about Lili. Believe me, there is a lot going on with her as well. Her language continues to explode, she enjoys creative activities such as coloring and Play-Doh, loves puzzles and is developmentally a bit ahead in that department. However, the big news with Lili is that she is officially potty trained. We started on August 1st and as of this week she is now wearing her 'big girl' underwear all day and all night. Woo Hoo!!!!!!

Just needed to post some positive news :-)

I'll try to get some updated pictures posted this weekend.

Thursday, August 20, 2009

First We're Up and Then We're Down

I should have known things were too good to be true. Ryan went from dealing with all the changes 'okay' to not being able to deal with the changes at all. Dave is on his way from from an 1 hr 40 min meeting about Ryan. Ryan, like many individuals with Autism, has aggression issues. Changes in his life will bring out those aggressions and apparently things have taken a very noticeable turn downward. Even though the agency has submitted paperwork requesting funding for Ryan, they are not committed to taking him yet which means that everything is still very much up in the air. They still want to work with us, but have said that if they can't get Ryan's aggression under better control, they won't be able to take him. This spells S-T-R-E-S-S.

Our hope is that some suggestions that were made today will help Ryan get in better control of himself, but only time will tell. Problem is, we don't have much time to spare.

I wish I had more good news to report, but unfortunately that's just not the case today. Hopefully good news will come again soon.

Wednesday, August 19, 2009

A Day at Home

We stepped up Ryan's visits this week. He is going to day training (DT) every day, so I leave my house by 7:20am so I can get him picked up and on the road by 8:00am. That gets us to DT a little before 10:00am. He has quickly picked up on the routine and although he isn't always ready to go, he isn't putting up a fight over getting ready which is really nice. He is also anxious to get out of the van and into DT in the mornings, which is good to see. I've gotten some reports on how his days are going. While they certainly aren't perfect, everyone is making progress. They are figuring out Ryan and Ryan is figuring them out as well.

I also got a report from the supervisor of the home he'll be moving to, that his visits have gotten better there as well. He is starting to play games and tease staff a bit. Again, they are all figuring each other out.

He is doing his weekday overnight visit tonight and I'll be anxious to hear how it goes. It will be the first time that he's had to go through the entire routine of DT, home and back to DT.

It's also nice for Lili and I because we actually get to spend more than 11 hours at home. YEAH!!! Maybe I'll manage to get some housework done :-)

A couple quick Lili stories and then I must fix dinner.

Lili and I have spent a great deal of time at the park on the days we have to wait for Ryan to finish DT and his home visit. She has quickly gone from the little girl who is afraid to go down the baby slide, to the big girl who climbs up the steps to go down the biggest slide in the park. She had her first experience on the up and down (that's what she calls the teeter totter). She was only moderately impressed. Swings haven't been her favorite either, but she now enjoys swinging, especially when there are other kids sitting in the swings next to her. We've had some good times at the park over the last week and it's been fun to see all the changes in her development.

Spending so much time in Charleston means we're eating out 'a lot.' On Sunday we went into Kentucky Fried Chicken to get Lili some chicken. We walked in the door and she immediately ran up to the counter, looked at the cashier and said, "Chicken please." At least she was polite.

Friday, August 14, 2009

Visit Update

Just a quick post to let everyone know that Ryan's visits to the new agency are going well. Don't get me wrong, he's certainly testing the waters and trying to see just how much he can get by with, but the agency is standing their ground and Ryan is quickly figuring out that he can't snow them. I received a report from them this morning when I dropped him off and one comment made to me was as follows:

"Ryan understands exactly what we're saying to him. He has a lot going on in there."

Wow!!!! How I have longed to hear those words from an agency providing services to Ryan. This is only after 3 days of him being there on daily visits.

The agency has also impressed us in other ways. For example, Ryan had an entire picture exchange communication system (PECS) when we moved him in with his current agency. We showed everyone working with Ryan how to use his PECS. The result? They rarely used it and eventually lost every piece of his PECS. After just 3 days with the new agency, they have already started building his PECS and he is responding positively.

There is a lot more that I could tell you, but let's just say that I'm exhausted, need a shower and need my bed. We are taking Ryan back tomorrow for his first over-night visit and have already scheduled his visits for next week. The paperwork is being processed to have his funding moved to the new agency and we are hoping that the state moves it through quickly. Until that time, I will be making the 2+ hour drive for his daily visits. There is no way that any of us are turning back now.

Tuesday, August 11, 2009

Ryan - Follow Up

First of all, thank you so much for the comments that were left on my last blog post. The situation with Ryan has been a significant source of stress and your comments really touched me.

Things are moving in a positive direction for Ryan right now. The new agency has submitted a funding packet, which means they have put in a request to the state asking that Ryan's funding be moved from his current agency to the new agency. Once the state approves the change, Ryan will officially become a client of the new agency. This could happen as early as Monday.

As a result, we are beginning his transition today. I will be picking him up early this afternoon and taking him to visit the day training (DT) program for an hour followed by another visit to the house he'll be moving to. Each day, for the rest of the week I'll be picking him up and taking him for longer and longer visits to both the DT program and to the house with the goal being an over-night visit this weekend. This transition plan is far from what we would like, but he has to be out of his apartment by the end of the week and will need to transition somewhere so it makes the most sense to have him transition to the new agency.
With the commute to the new agency being over 100 miles one way, I'm going to be gone much more than I'll be home. As a result, I don't think I'm going to have much time for blog posts. I have no doubt that I will have plenty of news to share once things calm down and we have Ryan somewhat settled, so stay tuned.

Until then, please let me share a couple photos of Ryan.

Ryan and Lili at Christmas last year.

Ryan and Josh at Christmas last year. Can you tell they are brothers? :-)

Saturday, August 8, 2009

Ryan (Long Post)

I know I have shared information about our oldest son, Ryan, but I don't know that I've shared a tremendous amount of information. Therefore, I'm going to discuss some of what has been going on over the last few years. If our experience can somehow help just one family in a similar situation, this will all be worth it.

Ryan is 28 years old and has Autism with a related seizure disorder. He is non-verbal, has some aggressive behaviors and functions at the low end of the Autism spectrum. Ryan is also loving, has a good sense of humor, enjoys looking at books and magazine, enjoys going on van rides, likes being outside, loves babies and small children, enjoys music and dancing, loves to eat and the list goes on. Raising Ryan was met with many challenges along the way and was a learning experience like one I never imagine.

We have strived to allow Ryan the opportunity to live a normal life. This included the goal that he would one day move from mom and dad knowing that moving away would require 24/7 staff to assist him. But we moved forward with that goal and at the age of 24 we found a local agency and moved Ryan into a Community Integrated Living Arrangement (CILA).

The first home he lived in was a large home with a 'huge' fenced in yard that had an older style playground type swing set and plenty of room for Ryan to walk around safely. Part of Ryan's sensory needs includes swinging and movement in general, so the set up was pretty good for him. Yet, we were nervous and had concerns about how well he would do living away from us and while his adjustment was not seamless, he began to feel comfortable and had a good team of staff members working with him. We began to feel comfortable as well and felt that he was going to be successful. It was at this point that we began to discuss our desire to adopt and our lives began to move in a different direction as well.

After living in the home for almost 2 years, the agency decided to close it and move the 6 residents from that home to other homes in the area. We were not at all happy with this news, but there was really nothing that we could do about it. We also knew that for any change in Ryan's life to be as successful as possible for him, he would need an ample amount of transition time. For example, when we moved him into the CILA, we made the move over a 3 month period. Granted, it was for our benefit as much as Ryan's, but we all felt it really did help him adapt to his new home much better than he would have if we had tried to move him within a month. So, we communicated the need for plenty of transition time which wasn't taken seriously and after a grand total of 1-2 hours of visits the agency moved him. The house was also much smaller with 4 other men living there, a smaller yard with no swing, and the agency refused to move any of Ryan's current staff members to the new home he was moving into, even though one staff member requested moving with him. This move had failure written all over it and to say it did not go well is a gross understatement. Ryan was not a happy camper in his new home!

Less than a year after moving him into his second CILA, the agency decided to close that home as well and would again be moving the residents to other homes in the area. Just not a good thing for Mr. Ryan. It was at this time we began to look at other agencies that provided services to better meet Ryan's needs. We didn't have much time though and knew that it was going to be very difficult for everyone involved, especially Ryan. However, we did find an agency that came to meet Ryan and felt he would be a good fit for their agency and vice versa. This agency was located further away, however, they had a home about 30 miles from us and wanted to keep him as close to his family as possible. So, we began taking Ryan for visits while they started the paperwork process. After several visits, the new agency decided that Ryan would not be a good fit in that particular home due to the extreme physical needs of the majority of residents in the home. Since they didn't have another opening, they would not be able to provide services for him after all.

Ryan stayed with his current agency and they moved him into a 1-bedroom apartment in the area. The agency rented out 4 apartments on one floor of a building, with full-time staff for all the residents in those apartments. While this move was easier for the agency, it was far from what was best for Ryan. However, he did better than we expected and the agency told us they were going to finally bring someone in to do some Autism training with their staff and had plans to provide services that would help Ryan succeed. Based on this information we were hopeful, but not overally optimistic. After all, Ryan had been with the agency for over 3 years at this point and they had plenty of time over those 3 years to get training, yet had not done so.

While the arrangement was not perfect by any means, the agency was still talking about Autism training for their staff and we had hopes that there would be some changes. Then the changes came. Ryan decided he had had enough and wanted something new a different, so he left the floor of his apartment building and decided to go visit another apartment in the building. That's problem #1. The residents of that apartment are not clients of the agency. That's problem #2. Ryan was not invited for a visit. That's problem #3. The family in that apartment are from a different country and English is not their first language. That's problem #4. I think everyone gets the picture.

The agency called us in for a meeting and at this meeting informed us that they would no longer be providing services for Ryan and would be terminating those services in 30 days. They gave us a copy of our rights, which included filing an appeal, which we did. However, we also knew that the appeal would probably only provide us with additional time to find something else for Ryan. So after 4 years of service, closing homes, moving Ryan, not following through on things and basically setting him up for failure, we were now in a position of trying to find a new agency within 30 days. It was stressful beyond words and we knew if we couldn't find something else he would be moving back home, which really wasn't going to work. You see, Ryan really needs staff and moving back home would require that I became his staff 24/7, which is too much to ask of anyone, even mom.

I spent the remainder of that day, as well as several days following the meeting, looking for other agencies in the State of Illinois who had programs specifically for adults with Autism. The list isn't long folks, but I began to send out emails, giving a brief explanation of Ryan's situation and asking for assistance. I think I contacted somewhere between 10 and 12 different agencies and most weren't going to be able to provide us assistance for one reason or another, but I did find some success with a couple agencies and before we knew it we were going to meet with one of them.

That meeting went much better than we had hoped. We were impressed with the two agency representatives we met that day, loved their day training program, but had some concerns about one of the homes they would consider as a possible CILA for Ryan. The concern was the fact that Ryan would make the 8th resident in this home and having him move from living by himself for the last several months, to living with 7 other people may be a bit much for him. The other home was not yet open, but it was a 3 bedroom home, so he would make the 3rd resident and we felt much more comfortable with that arrangement and left that initial meeting with some hope, but no commitments. However, the following week they contacted us and set up an appointment to come meet Ryan. This was a good thing. No agency is going to waste their time visiting a potential client unless they felt it might work out. So we went to meeting #2. Again, the meeting went much better than we had hoped. Not only did the agency representative get a pretty good picture of Ryan, his needs and capabilities, but the representative from his current agency that attended this meeting actually validated our concerns, complaints and frustrations with the answers to the questions presented by the 'new' agency rep. We weren't hurt and angry parents that were trying to be vindictive, but we were actually expressing facts and that was now confirmed to the 'new' agency rep.

Early this week I received a 3rd call from the 'new' agency asking us to bring Ryan for a visit. That visit took place late yesterday afternoon. The visit went well on several levels. When we had picked Ryan up from his apartment, we were informed that Ryan had a seizure during the night and another one in the morning. This meant that Ryan's balance was not great and he was a bit tired, but he was in a pretty good mood. He enjoyed the drive and was definitely checking out his new surroundings when we arrived at the house for a visit. Then, while sitting at the kitchen table, he began having another seizure. YEAH!!!!!! For most parents, your child having a seizures is not a good thing, but in this case, it is a really good thing. Now an agency representative had the opportunity to see another side of Ryan's life and would know what else they could expect. The agencies reaction? Great!!!! They have other residents who have seizures, we discussed their protocol, and they were not at all concerned by what they saw. They were actually very compassionate and asked us several pertinent questions.

I wish I could say that Lili was on her best behavior during our visit, but she is 2 years old and didn't handle the attention Ryan was getting because of his seizure. In addition, it was close to dinner time. Need I say more?

After being at the house for about an hour, we decided it was probably long enough for Ryan and it was definitely long enough for Lili so we made our way to the van with the agency rep following to continue our conversation.

I can't even begin to explain just how impressed we are with this agency and how thankful I am that I found them. They have decided that Ryan will fit in and it is now up to us to decide if we want to move him. If he moves, he would be moving into the 8 person home. This was was initially a concern, but after visiting the home with all the residents there, we think it could be successful. The 3 bedroom home sounded better on the surface, but after getting more information regarding the residents of that home, it would not be a good fit for Ryan at all. The other plus is that the agency day training program is different from others we've seen and for the first time Ryan could actually be successful in this type of program. There are many more positives I could talk about, but this post has already become much longer than I expected.

Of course there has to be something that isn't good about moving Ryan to the new agency right? Currently, Ryan lives about 20 miles from us. If we move him, he would be living just over 100 miles away. This is where we will disagree with some parents though. When our children grow up, our hope as parents is that they will move on to live their own adult lives and be successful in what they do in their lives. That is what most parents strive for. Some adult children move away, yet live within close proximity to their parents and see them frequently, while others move further away and don't see them as often. Remember, our goal has been allowing Ryan to live as normal a life as possible and we have tried to do that, but he hasn't been successful which means that we haven't been completely successful in fulfilling that goal. Therefore, it's up to us to provide Ryan with the opportunities necessary to learn, grow and become a happy and successful adult. To do that, we now realize that he needs to move further away, so on Monday I will be contacting the new agency and asking them to begin the paperwork so we can move Ryan. Due to the situation with his current agency, it isn't going to be the ideal situation that will allow for an adequate transition, but we know we will be working with an agency that has a level of understanding of Autism that his current agency never had and probably never will.

No one ever said raising children was going to be easy and having a child with special needs has certainly added a layer to parenting that I didn't fully comprehend. I'm not always sure why Ryan was given to me or why I was given to Ryan, but my life is forever changed in some very positive ways because I'm his mom.

Friday, August 7, 2009

Short Post

I'll post more detail later, but we're taking Ryan to visit a home, with a new agency this afternoon. Wish all of us luck that this goes well!!!!!

Tuesday, August 4, 2009

Life's Highway

Twenty-one years ago today, Dave and I made our way to the hospital and a few hours later our youngest son, Ben, was born. He weighed in at a whopping 6 lbs and was 18 inches long. I can still remember many details about that day and a few in particular come to mind.

1. This would be the last time I would go through pregnancy (thankfully, because my pregnancies were not enjoyable)
2. This would be last time I would go through labor and delivery (which was actually easier in many respects than my pregnancies)
3. This would be the last time I would become a mommy again.

Okay, so the last one turned out not to be accurate, but I do remember thinking all these things shortly after his birth.


So, my baby boy turned 21 today and my baby girl is 2 :-) Baby girl will join our family sometime within the next year then our family will be complete. Okay, I know I said basically the same thing 21 years ago.

Here is my baby girl and my baby boy. Not the best quality photo and I really need to get an up-to-date photo of the two of them together. Maybe tonight at the birthday dinner.

Speaking of my 2 year old, we're officially potty training. So far, so good. It hasn't been completely accident free, but it's been mostly accident free which is really good in my book. I would say at least 95% of the time she appropriately tells me she has to go potty or pah-ee as she says it. The other 5% is either waiting too long (accident) or wanting to sit on the potty so she can wash her hands afterwards.

The last bit of news to share is that two months ago today, our dossier arrived in Ethiopia. We were never given a registration date. I've asked our agency several times, but they haven't received the information from the attorney in Ethiopia. Therefore, at this point I have to complete our count down to referral using the dossier arrival date. Two months down and counting.

Saturday, August 1, 2009

GAFE and After GAFE

I was going to go into detail about GAFE, but realized that it probably makes more sense to just direct anyone who is interested to the GAFE site. If you click on the tabs, you can read all the activities, the charities that are supported by GAFE, etc. This was our first year attending and our biggest regret is that we didn't attend more of the break-out sessions, but we'll make sure to do that when we go back to GAFE 2011.

Lili enjoyed her time at the crafts tables though.
And we simply enjoyed being there.
Lili also had her own GAFE shirt, but the smallest shirt size was still too big on her. Not only did it look like a dress on her, but the neck kept falling off her shoulders, so I decided to go with something that fit. She should be able to wear it by GAFE 2011 :-)
After GAFE, we followed our friend's Josh and Nicole to Boston for a couple days. Both Dave and I are so glad we went, but sad that we didn't stay longer. Lili and Sergio (Lili calls him Joe) had a great time together. Little did I know that our little princess would enjoy playing with Joe's Thomas the Train set :-) Of course I wanted a train set as a little girl, so why wouldn't she like it. Now that I think about it, she liked playing with that train set more than she likes playing with her dolls. Hum, maybe we have a little tomboy on our hands.

Going to Boston also gave us the opportunity to visit the Wide Horizons office and finally meet in person the individual who was instrumental in helping us bring Lili home. Julie had met Lili on her visits to Guatemala while we were in process, but this was the first time she had seen her since she was just a couple months old. She talked about how she so vividly remembers holding her and how Lili just looked up at her with those beautiful deep, dark eyes. Even though we chose not to use the same agency for Naomi's adoption, we will forever be grateful to Julie and Wide Horizons.

After our Wide Horizons visit, we headed to lunch and met up with an old co-worker of Dave's. He suggested an out of the way place called Tequira Mexico. This restaurant is in a residential area of Boston and I'm sure we would have never found it ourselves. Our review:

Food - Awesome
Service - Better than average
Dining Room - Average
Restroom - The smallest public restroom I have ever seen in my life :-)
Overall - Definitely worth going.

Then it was off to meet up with our friends and head into downtown Boston. We decided to take the "train" (subway system). It was a new experience for Lili and she just sat in her seat and soaked it all in.
We made a short visit to the Holocaust memorial
Went to the place where everybody knows your name
Enjoyed some time on the dock, watching the boats and seeing the ocean
Had an awesome dinner at Joe's
Went to Mike's Pastry
Tried cannoli's for the first time
And enjoyed time watching the kids play while soaking in the smell of the ocean air.
Our east coast trip allowed us to spend time as a family, enjoy the company of friends (both old and new), and create lasting memories. It was wonderful!!!!