Back on Track

This morning marks our first visit to TEACHH. The evaluation, which is not being called an evaluation since there are no "formal" tests, will help to determine the steps or direction TEACHH will take. I am very interested in what they have to say...some days my heart is filled to the brim with pride and love with the progress I see Braden taking...and then some days I try hard not to cry and scream with frustration over the battles we fight. Overall, though, I have seen some great improvements...his speech is coming along, he is using 3 - 4 word phrases now, he can say "b" and "p" although he hasn't not applied them to words with those sounds. Yesterday he came up to me in the kitchen, hugged my leg, and said "I love you." Can I just say I melted because this was the first time I can remember him saying those words without being prompted! (I get teary eyed just thinking about it). And for some of you, it might blow you away to realize that this was one of the first times, it's one of those things you take for granted...I love you. It's hard for Braden to share how he feels...he knows happy and not happy and now he may be beginning to understand or feel love. Oh, please! I've also noticed him using some imaginative play. He was Jojo's prince (Heather called me the minute it happened, when Braden kissed Princess Jojo to wake her up) to him using trains or bath toys to create conversation between them. He's also been asking me to join in, Mama, be so and so...although I could scream if I have to play Thomas the Train again. So, needless to say, I'm really interested in what TEACHH has to say.
We've been trying a variety of strategies with Braden. We have him on the gluten/casein free diet, he has been receiving community based rehabilitative services, speech, occupational therapy, Heather has done some ABA therapy with him, and Beverly has had him out to her farm for riding therapy. He also goes to pre-school and this fall will be going three days a week. Ya!!! This will be much needed mommy time! He has been going twice a week and I relish those mornings I have "off." In addition to all of the therapies, I make us get out of the house. It would be so much easier to stay home, to stick to routine, and not have any melt downs. But this really doesn't help Braden, it doesn't give him the opportunity to use or learn some much needed social/transitional/environmental behaviors. It even helps me to learn social niceties when I have to learn to calm down and not scream at the top of my lungs or swat a little boy's behind when out in public, especially after I have been slapped, hit, screamed at by Braden. Some day I will have to write about some of our public outings and the displays experienced in an attempt to explain how hard to can be. But, since I just lived through one when I took Braden to the Pittsburgh Zoo last week, I really don't want to have to relive it just yet.
Thanks for taking the journey with us. Yes, it's easier to keep it all in and pretend that we are the perfect family. But then again, no, it's not. It's easier to share our journey, to receive support and advice and love...something Braden is hopefully starting to learn himself.

Okay, so let me back up and explain how we got here. Everything began with our concerns about Braden's speech or his lack of speech back in October/November. Then one night, we were at a dear friend's house for dinner...he was jumping on an ottoman and my friend called his name. He would not look at her when she repeatedly called his name. I could see how frantic she was becoming and alarm bells went off in my head. He never really made eye contact with her, would look fleetingly at her, but never sustained contact. Over the next few days, I made an appointment with his doctor. He reassured me that he didn't think it was autism but was concerned with the speech delay. We were referred to an ear doctor, who found fluid in his ears and went ahead with tubes, and to the local children's developmental agency. Our specialist came out to evaluate Braden in November and then wanted to wait to see how the tubes would help his speech. Around this time we also placed Braden in a local church preschool to help open time up for me so that I could start an internship with my masters program. Everything seemed to be going great, I was starting to relax and wonder why my friend became so distressed over his lack of looking at her....and then I was slapped in the face. I got a call from Braden's preschool in January. Braden was being aggressive in the classroom, was uncontrollable, and they were considering kicking him out. I went to pick up Braden from the director's office, confused over this sudden problem (I had only ever heard a few instances of Braden pushing and had thought we had taken care of it) and upset over the fact that they were considering kicking him out. As I talked with the director, she asked if I had talked with his doctor. I briefly described our concerns and shared that the doctor didn't seem concerned. I could see on her face that she was concerned and talked about there being a special school for kids like Braden...boy, did I see red. She probably didn't handle that well and I probably didn't either because I wasn't ready to hear that. My dear friend called me that afternoon and I dreaded telling her what had happened because I knew what she would say. She metaphorically slapped my other cheek and woke me up...Braden being kicked out was not normal and there was something wrong. I was very abrupt for the rest of the conversation, not because I was mad at her, but because I was crying uncontrollably. I knew she was right. The next day I made a list of things I was concerned about and was shocked by what I read...how could all of these things have gone on and not take notice...I was looking at each individual piece and not at the whole picture. When I saw the whole picture, I got very scared. I called our early intervention specialist, told her all of the concerns I had written down and requested that the psychologist evaluate him. Here is what I had written:

• kicked out of preschool
• pushing other kids down forcefully
• running, head down uncontrollably and running in circles
• hitting teacher (once observed by me and once told by director)
• won't sit at table for snack time at preschool
• told to me by director that he pushes children who enter his space and doesn't make eye contact with other kids
• running in circles at our house
• obsession with wheels and pushing objects with wheels - how he lays to look at the wheels
• will open and close doors continuously
• temper tantrums over unknown reasons
• speech and language delay
• hitting us and others (seemed to have stopped but has resumed)
• lines up cars, trains, other objects
• screams and cries over trivial things, doesn't use language to convey what has upset him
• will walk on toes
• will give hugs and kisses when asked but rarely does it without prompt
• likes "Ring around the Rosie" but when analyzed, think it's more about the spinning and not so much the song
• rubs thumb over fingers when he gets excited
• hard time with transitions, especially when coming into house (ours, grandparents, some friends) from outside
• turns lights on and off
• will slap cheek/ears when upset
• played with belly button when upset or uncomfortable but has now moved it down south...

The first evaluation was done on February 13th. They came out to the house and observed him. After comparing notes, Braden was borderline, the results were inconclusive. Now, as a teacher, I knew that if I didn't get a diagnosis, Braden would fall through the cracks and not receive any services. But how could I face labeling my child? The afternoon was filled with phone calls from the agency, there was another test they could give, would I be able to come to the office, when was the best time....possibly waiting another month before this evaluation, trying to decide about the evaluation or with the support of the psychologist, labeling my adorable son. But finally we were able to work out a time within the following week. This evaluation would give us more information and maybe give us the diagnosis. After this evaluation, I knew....they didn't have to tell me, I knew. Braden is high functioning but he was diagnosed with full blown autism...he fell right in the middle. God, why? I'm still asking...I don't understand, I don't know if I have the patience, how am I supposed to help him? This at least gives a background of where we've been. I will get you up to speed on my next post about where we are now, what we've read, what we're trying, good things we've seen, problems we're still having, and wonder about where to go next....

April is Autism Awareness Month

I never thought I would be here...this happens to other people, not me. But it happended to me or more specifically it happened to Braden. I am trying to understand why my son was chosen to fight this battle and why Bob and I were chosen to be warriors for his fight. And I have yet to find the answer and I know I never will. But if this is my path, then I will try my hardest to help Braden fight this battle. The past few months have been so stressful for everyone and after Braden's diagnosis on February 18th, I feel as if I haven't been fighting hard enough. I've been wading through school requirements, internship projects, and feel as if I haven't focused enough on this battle. Today I dropped Braden off at pre-school and noticed a table highlighting April as Autism Awareness Month and I think it was my slap in the face. I want to fight again and one piece of my fight will be Walk now for Autism. I want to build a team of family and friends, a team that will help Braden to fight but also a team that will surround Bob and myself in love and support. Sometimes it's hard to talk about the diagnosis and everything that needs to be done. But if you will join our team and help us fight, I will try to keep everyone updated through Braden's Dream's blog. Because it is Braden's Dream that he will hear "You have been cured."