This note is from the spring. It is from Jonathan's reading buddy, James. James and Jackson were in kindergarten together and his family has been so good to us for the last four years. I was grateful to find out that James was Jono's ready buddy - the school does a good job of pairing kindergarteners with people they know as reading buddies. He knew that Jono loved peanut butter and jelly sandwiches.:)
Joel touring the house with me before it was
finished, trying to entertain himself.
Someone wrote all over Caillou's head. Hope Molly won't notice...
Future ad for Charmin. Better than the bear campaign.
Why the fascination with winter garb?
Good helpers.
This is Joel's standard pose these days.
At least they aren't fighting...
Sweet brothers.
I think this was Joel's birthday. He was bound and determined to go to Edgewood Creamery because Jono had his birthday party there last fall. He thought that is what all people do on their birthday. The Grill kids met us there.
Jackson wanted to record his creation.
Jackson wishes this were his hairstyle. Just for a moment...
Joel loves getting his hair cut.
Activities while waiting for the doctor.
All the while, Mom is thinking about germs...
He loves our sunglasses.
Jackson in line waiting for food at Rock the Block
this summer. I had to explain to him that a lot of
those kids had not yet eaten today.
Worried someone else will get to his chili cheese fritos.
Jono often wakes up with his eye glued shut like
this. Yuck!I have started scrubbing his eyes at
night with tearless shampoo and it seems to work.
this. Yuck!I have started scrubbing his eyes at
night with tearless shampoo and it seems to work.
Jackson's hair glitters in the sunlight. Strange!
Books are the last thing on their minds. I still pick them out for them.:)
Joel and Meredith entertaining us at dinner with their faces.
Another crazy face.
This wild man.
Cousins on the swings.
He got out and had to be put back in. Scary because it
was a ferris wheel. Glad he didn't try it again at the top.
Good buddies.
Meredith and Pops.
Jackson and his friend spent about half an hour just spraying each other in the face.:)
Jono's first day of school. 
Joel's first time at Waffle House.
This must be his default pose.
Why does he keep doing this pose?
Daddy, the Jungle Gym.
Joel's first day of school.:)
Jono and Molly on their way to gymnastics.
The pictures above are all ones I found on my phone, waiting to be uploaded. Some are from the spring, some from this summer, and some just last week. Enjoy.
So the kids have been in school for a month. Jackson has some really nice kids in his class and a great teacher. Jackson has the artist brain and struggles to stay on task so I created a chore list at home, breaking it down into morning, afternoon, and evening. We have been in a rut where I ask him repeatedly to do the same tasks and I am hoping this will help. I also think it is time for him to be doing many things on his own. For his chores, he gets an allowance so he will learn to manage money (he can keep 80% but has to put 10% in saving and 10% in the offering plate at church). For other things, we are working on a ticket system where he will get rewards. We are trying to motivate him to follow directions at school, write his name on his paper, not doodle during test and note taking, read carefully, etc.
Jonathan is doing kindergarten for the second time and seems to be fine. His teachers are impressed by his improvement in his speech. He has the same kindergarten teacher who is wonderful and very patient as well as funny. His aide is a man this year. I am so grateful - I asked the Lord to provide a man because Jono seems to respond better. His aide also has a background in behavior so he is not phased by Jono's quirks... yet.:) Jono still growls at people but it seems to be less. There was a child the other morning that kept saying "hi" to Jonathan. Jonathan growled. The child's mother thought her child was being sweet. I heard the child say, "Watch this." Then he kept hounding Jono with "Hi, Jono! Hi, Jono!" He wanted to hear Jono growl. It wasn't quite malicious but he was still taunting Jonathan. I finally silenced the kid with "Hey, Buddy. I don't think Jono wants to talk." Then the child's mother looked embarrassed.
Joel started back to Early Arts this year. He, like his brothers, loves to stay home (I think it is because I am so great at providing such an exciting, loving, nurturing environment at home:)). His preschool is just wonderful but he was still anxious. Needless to say, twice now when I have picked him up, he has looked at me and screamed, "THAT'S NOT MY MOM!!!!" Thanks, Buddy. That's a new one. You want to play like that? Strap in, Buddy.
I was feeling so good a few weeks ago. I felt like I had a handle on things. We had moved and were settled. Jamie's business was moved and settled. The boys were all enjoying school. We were in a routine and finally experiencing some normalcy of life. Then, one night, after bathing Jonathan, Jamie said to me, "Have you noticed the bald spot on the back of Jonathan's head?" I had not - I am usually the one to bathe both him and Joel and move quickly to table the fighting. I looked at Jono's head and, sure enough, there was a huge spot underneath his hair. I cried for almost an entire day. I just had to grieve.
I remember last fall seeing a young boy with DS at a social event. He was bald. I remember thinking, "At least we aren't dealing with that!" As soon as I saw Jono's head, I knew we were, in fact, dealing with "that." I googled it and found that it was called alopecia. It is not uncommon in people with DS to lose hair cyclically. Jono has had so many challenges - heart defect, clogged tear ducts, no tear duct, tubes, adenoidectomy, tonsilectomy, ear tubes twice, apraxia, constant upper respiratory infections, ADHD, sleep apnea, ER visits, chewing metal objects incessantly, etc. I prayed and have been praying that the Lord spare him hair loss - that he wouldn't go bald at age seven. Will you please pray with me? I have reminded the Lord of all that He has allowed Jono to endure and would He please spare him this? And, let's be honest. I am not sure that Jono would care if he lost his hair. It would affect me and Jamie more. We are used to the stares as a result of DS now. If we had a kid that looked like a chemo patient but wasn't, we would get a whole new set and it makes me weary thinking of it. I know alopecia isn't cancer and it could be worse. Frankly, I am just tired. I find it ironic that I finally let my guard down and felt like we were getting a break - I was taking a breath - when we discovered this new turn of events. I know God is in control and I do have peace about it. I just will not let the Lord forget that I don't want this. I don't want my child to be bald for the rest of his life and I will continue to plead on his behalf for the Lord to intervene and allow his hair to remain in his head.
Thank you for reading and for your prayers. We so appreciate them!
Julie:)
thejuliewarren@gmail.com
