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.