A Crashing Rollercoaster in Need of Repair

I have described my walk as a special needs parent as a roller coaster ride at times. I felt that way about fostering as well, but more acutely now in the roles of parent, advocate, teacher and therapist assistant for Isaiah. The roller coaster crashed on Thursday night and I ended up crying at house church explaining some difficulties I am having in praying for Isaiah and accepting those prayers not being answered as swiftly or perfectly as I desire. I hate crying in public, but I think as a result somebody in that group (or maybe somebody who read my last blog entry) prayed for us.

Friday morning Isaiah greeted me with “Mama.” You may recall that it was not until after he turned four that he started to call me Mama. The “m” sound had eluded him until that time. I went to get him out of bed and he gave me the biggest hug of all time. While I got him dressed, he kept grabbing my arm and hugging it, making cute little affectionate sounds for emphasis throughout the hugs. Every opportunity he had on Friday and Saturday, he said my name and gave me another hug. He would wheel his walker over to me and hug my leg. He is certainly becoming more affectionate, but this was WAY over the top. It was a love fest for two solid days.

On Sunday morning it seemed the sweet spell had broken. He was quite grumpy before church causing Tony and me to drive separately in case one of us needed to take him home. I prayed throughout my drive to church that Isaiah’s attitude would change and/or we would have more patience or understanding of what was wrong. This is still the major struggle with the communication…when he is upset we don’t know if he is just being a stinker or if something is actually bothering him. As it has been explained to us, he lives in a somewhat chronic state of mild to moderate pain from the muscle issues, but we never know when that is a problem because he can’t tell us. He is overall a pleasant little guy, especially considering what he has to deal with on a daily basis. When he is grumpy, we wonder if he is in pain or just being a grumpy toddler. I was a grumpy adult Sunday morning, so I know grumpy happens. After being grumpy at home, Isaiah was amazingly good at church on Sunday. He enjoyed the songs during worship and then played with Micah in the nursery and the hallway during church. Several people took the time to walk up to me to tell me how amazing his progress seems and gave me specific examples of things they were seeing in him. When you walk alongside a child every day, it’s harder to see those changes.

Last night, Isaiah drank an entire cup of water from an open cup. He has had difficulty with the motor planning on lifting the cup and closing his lips, but he nailed it last night. We have also been working on trying to get him to say our name or what he wants when he wants our attention. He has a bad habit of loud growling when he wants attention. Since much of his communication is through signing or pointing, he needs our attention to say something, but he has not figured out to say our names. Unfortunately, some of the yelling may be a habit he learned in the first 18 months of his neglected life and it is a hard habit to break. We have been trying several things to get him to say what he wants. Yesterday, he said “Ese” when he wanted Elise’s attention and today after he began to growl for more raisins, he stopped himself and attempted to say raisins. It didn’t sound anything like raisins, but it was 2 syllables and it was a lot more pleasant than a loud growl.