This is a personal post. (Not about a personal problem, just close to my heart.) I have been asked to speak next Tuesday at a training for parent educators for the Parents As Teachers program. WOW! Seriously-people are coming from all over the country to this training, and I will talk to them for 30 minutes about my life with my children who have special needs! Super scary, humbling, giving me an ulcer, and making me excited all in one!
As I have started to prepare to talk I have been thinking back to each of the times we were told that our children have some special problems. I think the hardest one was when Madi was 8 and diagnosed with Ulcerative Colitis. Ken and I both felt so helpless looking at her connected to wires, tubes and IVs and just cried. We cried for the pain she was having, we cried for her and her future, we cried because we couldn't fix what was wrong with her. We cried because we tried to do everything right with her and we felt like we failed. Then we started to fight the disease with her, and we all fought, and fought, we tried everything and we still lost. She had her large intestine removed 2 years and six months after she was diagnosed. It was hard to go through that, it was most difficult to see her struggle and her suffer, it was hard to accept the fact that we lost the battle with UC. It was also hard to convince our families the decision for surgery was the right one. She does feel better now, and her life is more normal and it is easier to see that although we may not have wanted to do the surgery it was the right choice. We can see what we learned and how we grew from the experience.
Ben was a different story. I have always felt like I am trying to keep up with him, from the moment I delivered him in Ken's truck, to him being 8 months old and running, to a 18 month old little boy trapped in a world without communication. He would take his trucks and drive up and down the hallway with them all day long. He didn't care if we were there or not, he really had no way of communicating with us. He wouldn't ask for something to eat or drink, he was just to himself. I didn't (and still don't) always know what to do to help him. We took him to the doctor and they placed tubes in his ears. The doctor said he couldn't hear before because of fluid, but he should be fine now, and he started therapy with First Steps and had 2 hours of speech and language per week until he was 3. He started to talk, and he had an amazing vocabulary, he could tell you the most amazing stories. He started preschool 2 half days a week from 3 until kindergarten. We thought everything was fine. He went through kindergarten and that's when the trouble began again. He worked so hard, but reading wasn't coming to him. He tried so hard but he couldn't hold his pencil right. He was still doing speech and language therapy, but he still had trouble following along in a conversation. He started OT therapy in November 2008 for his fine motor skills and was tested for reading class at the end of kindergarten. Everyone loved to be around him because he was so funny, he always had outlandish stories that entertained everyone. They were so funny because they are fiction, and are always off the topic of whatever is being discussed. In July 2009 he started 1st grade. He started an everyday reading class, he has speech and language therapy 2 times per week and OT 2 times per week. He continued to work as hard as we asked him to. He still was making no progress. Then he started throwing fits. He would get so upset he would yell, and hit himself. He could not calm down, and we would have to put him in his bedroom for extented periods of time. He could not look you in the eyes. He would look at your face, but never in your eyes. He would obsess over different subjects. Space, the Titanic, roller coasters, he went a whole year after visiting Cabela's when we had to call him Camper. He couldn't wear underwear or socks. One day before school it took me 45 minutes to get his socks on, and that was the final straw. I made a doctor appt. for him. I have always had a fear in the back of my mind, this ghost word that would label my sweet boy forever, and I felt like it would trap him and hold onto him. Austism. The fear that my bouncing baby boy with his 10 fingers and toes would not be perfect anymore. This black cloud that would hang over him forever. Austism. I took him to the doctor and my fears were confirmed. Not austism exactly but on the austim spectrum, Asperger's syndrome. All the problems he was having fit the mold. Fine motor, reading, sensory issues, language problems, his off topic, crazy stories. Having trouble acting normally with his friends. His fits, and amazingly enough his off the charts verbal reasoning skills with his very, very low comprehension scores all made sense. Maybe because I always knew he was a little different my other kids the blow wasn't as hard as I thought it would be. I didn't feel like I had been punched in the stomach with no warning, just punched in the stomach. Ken and I had a conversation and talked about how we felt about it. We both were sad he was different, but not surprised, and we both were thankful it wasn't worse. We still are fighting this monster. We will win this battle.
Will was the perfect baby. I felt like the Seinfeld episode when they wanted to go out on top. We had 4 girls, 1 boy and now a brother for Ben! How perfect, everyone has a partner! He was born after a perfect labor, my brown haired baby I always wanted. Life was really good! He never baby talked much, he never made sounds to go with his toys, but all this we didn't really notice or have time for because Madi was very sick at this point. After Madi's 3rd major surgery (and her 3 week stay in the hospital) we went to stay at my parents' house for a month. (We did this because they have 2 more bathrooms than us!) That was all Will could take. He completely stopped making any attempts to talk, he became super clingy, and generally unhappy. After we came back home I took him for a check up at the doctor. That was the day I really realized something was very wrong with Will. He wouldn't even look at his doctor, he just buried his head in my chest. She asked about his speech and his other skills. Of course, I knew they were below normal. I then called First Steps and another one of my children started therapy! He has special instruction therapy, speech and language therapy, and OT therapy. He also started attending preschool one day a week. In this period is when Madi's wish was granted and we went to Disney World. That trip really helped him to start to feel secure again, I think because we spent 3 weeks together without any distractions. We saw some friends in Florida the first day we got there and then again the last day and they could not believe the difference in him, he was like a different boy. We look at our pictures from the beginning of the trip and he just has a frown in all the pictures, by the end he actually was smiling some! He still doesn't talk too much, although he gets new words each day, and he likes to sign. He has a condition called aphrasia, so his brain has to work very hard to form motor plans for his words. He will start preschool next month and I am so worried how he will do it without me being there to translate for him.
I love each one of my children so much, just like every parent, and I am thankful everyday for the opportunity to be their mother. I feel blessed that I was chosen to be their mother, and I pray everyday I can give them what they need from me.
