LInco:

Karen T here:)  My heart is heavy for you and your family.  I know that this has been a struggle for you and I was hoping that this past year would bring you a solution.  Would you be able to visit more often if you lived closer?

Karen T>

     We have asked for a year now to have him on a list to be moved to an available place closer to home and it has been ignored completely. The immediate reply is that there is nothing available. They haven't checked to see if there is any. It is that the spaces are rare and go very quickly. We understand that, but that is why we asked a while ago. Nothing has changed. I have to go and work each day come home and help my wife with the other kids so she can have sometime to rest, and then try to figure out legislation and these other peoples job so I can force them to do what they are supposed to already be doing. If we or Austin had a lawyer this wouldn't be happening. They know we aren't wealthy and this seems to keep them relaxed. Kind of like a dog with no teeth. We have made them bring him back to our home for visits and pick him up. This has been very tough for Austin and ourselves when we take him back to the respite home because we are leaving him each time. We don't want him to start to resent us for leaving him behind. He wants to be home and he gets very upset when we leave him at the respite home. When they are forced to pick him up they are taking him from his home and us. Also it isn't right for us to have to visit him in a respite home when he was supposed to only be away for a short time. His HOME is with us and always will be. He should be brought back to it as much as possible so he keeps that. They have not been doing this and we are losing as time goes on. Do you know how hard it is to tell your child you love him and then ask if he loves you and then he signs "different dad, or different mom" for an answer? But we have to do our part to stay within the system because we need help to care for him. He will be the one that suffers if we just remove him without it because it is our "parental right."  We have had to be constantly vigilant to keep any rights and they keep finding ways to slowly strip us of them legal or not. This goes back to the laws being to old for what is happening today. I have incorrectly used the term "Foster Home and Foster Care" in previous post. "Respite Home and Respite Care" are correct terms.

    We had one of our visits today. Austin is still in good shape. He has a few minor set backs medically but otherwise is very good. He can now say the word "oatmeal" clearly. This is HUGE we were over joyed. He signs very well but we have all the confidence his language skills will contine to develop enough to communicate fully one day. He is still unable to walk or crawl and can stand very breifly on his own if you hold him. He learned very quickly about "right and left". I showed him on his hands three times then he knew when I asked him where his left foot was or right ear etc. Even his worker was surprised at how quickly and well he was doing it. He never want s to have to go back to the respite home when he comes over and it tears us up inside to send him but until we can get the other agencies involved to realize that he should get the same care at home and not just because he is in a respite home we are caught between a rock and a hard place. We have to be content but remain unsatisfied.

  Here is our latest troubles. Austin is doing very well with his speech now. He may not be as stimulated as he would be if he were home with his other brothers and sister. In the last two months he has been brought to our home with injuries that aren't common ones we would expect from his self injury behavior. The injuries have been left as a surprise for us to discover with our own vigilance we still have for our son. His one foot was swollen and they said he caught it when we asked what happened. We (our mistake) assumed it had been checked out. This visit his foot is very purple in color and we think it might be more severe than the respite home has led us to believe. They said it has been x-rayed now because it went purple. Also the left side of his temple and brow area was all scabbed up. This area is common for his self injury. So when I said to Austin he hurt himself I was shocked to get a reply from the respite home that his wheel chair had tipped over and he smacked his head. People have died from lesser falls than this with head injury and the home doesn't even know details or aren't telling us them. The whole point of him being in a care facility (home) is for the one on one worker. When he was hurting himself in our care we at least were trying to prevent it and were present at all times to know what happened. I'm not sure where to even start or how. Why does everything have to be such a struggle for people to listen to what the parents have to say about their own child. It shouldn't have to come to getting lawyers involved but they seem to force us to a breaking point where there aren't other options. I'm going to have to take as much time off work as I can in order to go after the parties involved and have Austin brought home with care or put in a respite home close to our home. I will of course have to fight and battle every step of the way for this to occur. I will keep you posted. I truely hope other people out there don't have to go through this. It is undescribable the emotional and mental anguish and strain it has on us as parents and as a family.  

Linc:

I wish I could be more help to you:(   Know that I am praying for your family to have a successful end to this story soon so you can all be living in the same house again!   Keep advocating!!

   Apparrently the story from the home Austin is in was that the foot injury occured from him falling off an air hockey table he was placed on. They said to the agency that it was checked right away. We were told it was x-rayed after it was purple (week later). The fall off the table was March 5 and we just found out the details tonight from the agency. We are in shock and discust. We had him on Sunday and no details were given to us for anything. We have requested that emergency intervention be done. He can't stay there. If he comes home we have no one on one staff to help him. He needs this because of his previous self injury behavior. He hurt himself in our care and over 2 years we were more and more frustrated trying to make him stop. All our time was restraining him. You can walk away from a crying baby and compose yourself with no consiquences. Walk away from a child smashing there face to the point of bleeding to compose yourself doesn't work. The frustration is from trying to keep the child from injury so you can't escape. This was our life for sometime until the issue was forced upon the government by Children's Aid. Now the help he is getting is leading to his injury by neglect or complete irresposability. We have had all our emotions that tore us appart with him being injured before brought back. We are heavy chested, choked, stumbling for any rationality for what we have done. How can we have our son getting injured in the hands of a stranger and he isn't doing it to himself this time? I'm almost shaking typing this. I'm not sure how much stress causes heart attacks but think I'm well on my way. I'm ashamed to not be able to help my son or family deal with this. How can anyone? I'm going to get air and attempt some composer but this will eat away at me until I know he is safe again. I have to follow the buraucracy to keep Austin's funding for help.

    Well we had Austin up to the Children's Hospital of Eastern Ontario (CHEO) a couple of days this week. He had to be put into an OR to get a tooth removed that grew from the roof of his mouth (right in the middle). He did very well. It was lots of travelling but we love the extra time we get with him. There is supposed to be advertising for him to have a respite home in our hometown so he can attend school this year with his siblings. That is by our doing. We couldn't allow him to continue to be involed and enrolled in services that keep following a path of him being separated from his family. This was a way we could force the powers that be to finally understand all the issues we have recognized for sometime and make them deal with it. We are trailblazing with our government and it is difficult for all parties involved. We are outside of known ledgeslation and have to go by trial and error. We feel like they are a tornado and we are a lonely house off to the side waiting to see if it has any effects on us. As the twister gets larger and larger with more parties involved this little home where it started gets forgotten or isn't included any longer. We will continually advocate for Austin to have things that are in his best interest, and hopefully it ends up helping with the interests of many who need care.

 A very interesting thing happened on our travel to the hospital. We heard a news report about the government holding hospital administrators salary based on performance. This was interesting because I have sent a few emails to the Premier or our Province when we first started down this road with their help and this was an issue I mentioned in correspondance. One voice or idea can be heard and make a difference if it is heard by someone with an open mind. As lost as we feel in this whole thing this little thing gave us some renewed confidence in our officials. It has been almost 2 yrs but it has resulted in action.