This past spring I was worried about how we would survive this summer with our daughter. She is still struggling to adjust to being in a family, and that creates tension and chaos in our house a lot of the time. I knew I couldn’t survive this summer with her and the boys at home all summer. I can’t take all five out anywhere because of her behaviors and I really knew that if we all stayed together in the house all summer either her or I would need to be committed at the end of it all. So, we found this summer camp for kids with special needs that is run by our local park and rec department. It’s really affordable and has been a lifesaver. Seriously, I don’t know how we would survive without it. I would really encourage other families with special needs kids, especially those with behavior issues or a lot of physical care, to check into a camp like this for the summer. It has really given us and her the respite we needed.
People are always asking me how Elizabeth is doing. Well, it’s hard to put it into just one word. A lot of time I just tell people she is doing fine because I don’t want to get into it. But since you are reading this you most likely truly want to know how we are doing as a family and how she is. The transition from school to summer was a hard one for her. She does not like change, at all! She thrives on routine and even if you tell her what is coming she just hates change. Even good change. But after a rocky first week, she got into camp and really loves it. It’s the weekends she hates. She really struggles to be at home with the family for any length of time. When you have grown up in an institutional setting you have no frame of reference for what a family is. And really for her, it causes her a lot of stress to be with the same people in such an intimate setting as a family for an extended period of time. She is still struggling with eating and refuses to eat with other family members around her. We have to feed her by herself after everyone else is done. When she first came home we wanted her to eat with the family at the same table, and for a few months she did that. But now that she is getting more familiar with us and we are not strangers to her anymore she is conflicted with us. There is a part of her that wants to let us into her world and to allow us to love her, but a greater part of her refuses to let that happen, because she has never allowed it before. Caregivers have come and gone and she has never formed sincere attachments to anyone, I don’t think. And to be honest at this point in her life, I am not sure she knows how. Whenever we spend quality time with her she seems to enjoy it momentarily and then the conflict within her arises and she lashes out physically at us and literally pushes us away. I spent about 10 minutes playing ball with her last night until she could not tolerate it anymore and she physically attacked me. Then I put her to bed and told her I loved her and touched her head. It sent her into such a tailspin and fit that she could not get her self under control and we had to use a sedative to get her to sleep. Yes, it’s that extreme. I will not lie to you and tell you she does not have major attachment issues right now, but all this brings us some hope. She is so bothered by us right now because little by little she is allowing us to affect her. It’s at about the rate of melting an iceberg with a hairdryer, but we are making very small amounts of progress, we think. It is going to take massive amounts of time and honestly I don’t believe we will ever have the same kind of reciprocal relationship with her that we have with our other kids. She just isn’t capable of that. But we are hopeful that in time she will allow us to care for her more.
As far as her self-care skills are concerned we have seen a lot of regression during the last few months. Which I have to say is disheartening but it’s very common for kids with attachment issues and especially for kids with Intellectual Disability. Although this morning, Glenn was changing her clothes and she wanted her hands washed and he looked at her and said, “oh, you need to wash your hands”. She walked over to the sink and washed her hands all by herself. We had no idea she was capable of that. It just shows that she is capable of so much more than she lets on. Our hope is that we can get past her attitude with us and get her to gain those self-care skills we know she is able to do. I think the best way to do that is to have an outside therapist do that for us, which we can have once she becomes a citizen and we can get the assistance she needs.
There is light at the end of this tunnel, but it’s very dark at times. She can be very frustrating at times when she refuses to do what you know she can do or when she pushes you away. Glenn and I live our lives with her in a state of neutral emotions most of the time. It might seem counter productive to some for us to show very little emotion when dealing with her, but for our own sakes this is how we find we can handle her best. If you take your emotions out of the equation then you don’t get angry with her when she is being ugly towards you or you don’t feel the pain of her constant rejection. I realize that seems harsh to some, but if you haven’t been in this situation you cannot understand. We are so thankful for our friends and family who constantly find ways to support us. From helping out with our kids, to cards or words of encouragement and especially prayers, we are thankful for you all. We could not do this without your support. This has been the hardest 7 months of our lives, but I feel like we are accepting where we are and living in the difficulties. It’s not where we want to be, but it’s where God has placed us right now and we are accepting that. We are praying for miracles in our daughter’s life, but until that happens we have to find ways to live in the here and now. We are learning a tremendous amount about ourselves and our family is becoming stronger as a result of this difficult period.