I read this subject title on an email today and immediately thought of our Andrew. He has had various therapies over the last 2 years as well as school. Every thing we have attempted to teach Andrew over this time has relied on data, evidence basis to prove that he understands or can complete a task. We have had a hard time proving to educators and therapists that Andrew is really still inside this little wandering body and knows more than what he shows. Most people are not as positive about Andrew's skills as we his parents are. I guess it's only natural but it really doesn't help in that the data collected on our sweet boy looks like a bunch of mountains. He has days where he is spot on- performing well, eye gaze great and leading us to believe- he knows so much. And then the next day or next few days he is non responsive, bored and data is 50% or just a chance that he got the correct answer or performed the task correctly. So frustrating!!! With Andrew I try to think about how it would be if I struggled with breathing- alternating between hyperventilation and breathholding while my hands kept moving even though I am trying to make them stop. I don't think I could concentrate long enough to make choices , pay attention at school or answer questions through eye gaze. More than anything I just want educators and therapists to give Andrew and other children/adults with disabilities the benefit of the doubt. It's when you least expect it that these folks really shine.
It has been forever since I have updated all on our family. It has been a year that we have had two precious foster daughters with us and what a year it has been. They have truly changed our lives and Andrew's life in so many wonderful ways. What can I say? We are blessed! Rose is our crazy and outgoing four year old, always nursing Andrew and bringing him out of his room to engage with the family. She is just a mess and makes me laugh so much. With her age comes drama though and wow I do not look forward to teenage years with her. Madison is our baby and we like to call her our "chiquita." She is small and had such health problems for the majority of time she has been in our care. Doctors thought of her as failure to thrive, developmental delay, possible Turner's Syndrome. Nope- she is walking, talking and thriving so well. She may have some learning challenges in her lifetime but she is doing soooo well and we couldn't be happier with this little girl. She is super dramatic too and loves to steal Mom's attention from her siblings. We are in the process of adoption for these two and I can't post pics yet. We were blessed when their parents rights were terminated this summer and while it is very sad it is also a wonderful for these girls. They are a joy and our life is so much fuller because of them.
Andrew is doing well. In March he had surgery for a feeding tube as he completely struggled with losing weight and his ability to chew and swallow. He got to where he was starving right before our eyes. Since March he has gained almost 10 pounds! YEA for the now big boy who is soo tall and really making his mommy sad at how much he has grown. I was just hoping he would stay 2 or 3 forever. He is now in an inclusion class at school that we fought to get for him and he rides the bus to and from school. He just loves it! He will also be getting nursing services soon. This will be an adjustment for him and for us as he has had the same caregiver for almost 2 years. He is really needing a higher level of care due to the feeding tube and this would allow for someone to go with him to and from school and stay with him. Another set of eyes but also a helper for him and I hate it that he has to always have someone but he needs it. We have really gotten use to someone always being in the house for him during the day just not on the weekend. He is still our happy boy, a real angel, smiling and just loving all of us and life everyday. He is like seeing a glimpse of Heaven everyday and I am so thankful for everyday we have with him.
We will have a new arrival in January with our second baby and fourth child, a little girl. Still don't have a name yet but am trying to work on it. We were more overwhelmed with the idea of having another child in the home but as it gets closer we couldn't be more excited about her. So, that makes 3 new children to our family in around 18 months of time. Wow! It is a a bit crazy but I wouldn't chose it any other way. We prayed for so long for God to bless our family with more children and He has!
Where do I begin? It has been too long since my last post. We have adjusted well to being a family of five and have enjoyed so much being the parents to two beautiful little girls. We had no idea how much we would learn and grow as parents and how quickly we could become attached to someone else's children. In other ways we had no clue how easy we had it with Andrew. He is the sweetest, easiest child ever. He has never talked back, told us "no", or needed timeout five times in a day. It was definitely a change for us taking on the girls, especially our little three year old, Rose. It took Andrew some time adjusting to have siblings as well. After the first two weeks he would cry at the dinner table if the baby cried or even if someone else was getting attention. It was definitely a challenge when all three kids would go off crying or yelling. WOW those nights were fun. Rose has grown such an attachment for Andrew and it is something I always wanted for him. She calls him her "buddy" and she knows that he is special and different yet treats him like her best bud. We often find her talking to him, feeding him, and singing to him when he is upset. It is precious!
Madison is our little one and she is such a cutie pie. When we first got her she couldn't do anything but sit and stare. She had no affect and was severely delayed. With help she is now scooting around the house and playing with toys, laughing, playing peek-a-boo and babbling. It's a fun time for her right now. She is still delayed and needs a lot but she is getting there and we sure do love this little girl. She does have digestive problems and asthma and was actually hospitalized over the holidays but is now doing better. Precious baby!
I think that part of my staying away from this blog has been due to confidentiality issues with now being a foster parent. I am always trying to be careful about what I can and can't say and for sure I am not allowed to post pictures, which stinks, because we have some really cute ones. Being a foster parent is a challenge in a lot of ways. In some ways I have felt like I have no rights and that the biological family is always a priority. It has been hard but in the end I know that these girls are worth all the pain and frustration that we have and are yet to experience. They deserve a stable, consistent, and loving family and if they ever become available for adoption we will for sure go for it.
Andrew has really enjoyed the new additions to the family, but has had some real struggles lately. He has been unable to put on weight and has had lots of trouble with chewing and swallowing food, which have always been his favorite activity. It takes him an hour to eat a meal and it really only half of what he could eat a year ago during meal time. We have tried nutritional supplements, giving him fatty greek yogurt everyday for breakfast, cooking food in avocado oil, but no luck on his weight. We actually went this past week for his annual aptmts at Texas Childrens. Doctor Motil, his GI, has recommended a G-tube (feeding tube). We knew he was headed down this road as most children with Rett battle feeding and swallowing during their life. We saw his GI back in September and she gave us these last few months to keep trying and to really think over this possiblility. I have a lot of mixed emotions about this but don't really feel like writing them out at this time. Other than feeding he is still our happy boy that brings us so much joy and we are so thankful for everyday with him. I just can't believe my baby is four years old. I love him now but I was really hoping he would stay about 2 or 3 forever. Time flies.
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.