Saturday, September 22, 2012

September 2012

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.

                                                            Boys at Friend's pool 

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. 

Jackson's hair glitters in the sunlight. Strange!

             My kids love going to the library so they can play on the computer or rent videos. 
             Books are the last thing on their minds. I still pick them out for them.:)

                                               Joel enjoying Jackson's train track creation.

Joel and Meredith entertaining us at dinner with their faces.

                               This kiddos are both third children and used to being funny.:)

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!


Wednesday, August 15, 2012

I would blog more often but many of our days can be very difficult with our crew and I don't want to use this as a format to complain or discourage someone else. Don't want to be a Debbie Downer, you know? 
There are people on facebook lamenting the end of summer yet all I feel is relief. This summer started out relatively easy but toward the end of June the madness began, as I mentioned in my previous post. Jamie moved his office into our rental house. We moved two weeks later, he moved his business a week or two after that, and I was trying to unpack the house while dealing with kids that were no longer going to camp or being entertained. There has been a LOT of screaming and I don't know if my ears will ever be the same. I cannot figure out if it is the boys' squealing/screaming or if it is the constant change in barometric weather as we face continuous thunderstorms. 
We find out this afternoon who Jackson's fourth grade teacher is. I am praying it will be a good fit and God will provide him with some friends. This is such an awkward age for him and he refuses to engage in competitive sports. The strange thing is that he is very athletic but he does not like to fail. He wants to be the best without trying. Therefore, he would rather not try at all. Jamie and I both are very competitive so we understand that, but not trying? We both would work our tails off and exhaust all our resources before giving up. We must figure out how to motivate him to shed this approach and to resolve to try - not necessarily at sports but this seems to be bleeding over in all areas of his life. It is hard to watch your kids struggle and realize it is your job to guide them when you are not quite sure where to start. 
Jonathan will repeat kindergarten and have his same teacher from last year. She was gracious enough to offer, knowing he would do better in a familiar situation. I grieved for a while, wishing he would have been the kid with DS who was on grade level even if he had to work harder. I know it was wrong, but felt like it was a reflection on me - if only I had worked harder with him then he could have advanced to first grade. But, considering he barely talked and has both attention and sensory issues that make every task hard, I had to let that go. If it was just DS we were dealing with, it would be a whole different story. But, his inability to communicate clearly, his difficulty in attending, his constant struggle to remain healthy, and his sensory issues affect everything we do. Jamie and I "divide and conquer" constantly. 
I envy the families that can do everything together and have fun. If it is too loud, Jonathan cannot handle it and one of us must attend to his needs to make certain he does not take away from the other two kids or other patrons. At restaurants, he refuses to eat unless he can have chips and dessert. Every meal is a fight with him and we do it at every stinking meal. I feel sorry for Jackson and Joel, at times, because their family experience is not normal. Many would say, "What is normal?" You know what I mean. 
I pray Jono can learn better this year, focus more, and that he wants to learn. I hope that he makes friends and that the other students are kind to him. I pray that his aide is the best fit. I pray that his teacher continues to have unending patience and remains laid back. 
Joel continues to screech and react quickly to situations. His response quickly escalates if he is not paid attention in his time frame. He still says and does very funny and sweet things. All in all, both he and Jackson are very patient with Jono but none of us has the patience of Job. Joel will go to preschool three days a week and I am hoping to have an easier year of it. 
We are so very blessed and God is with us. I know it. There are situations far more difficult than ours people live with everyday. I need strength, wisdom, perseverance, and patience. I need to remember to ask Him for help because I CANNOT do this life on my own.

Saturday, August 11, 2012

Summer 2012

After moving last month, we unpacked and got ready for company. Betsy, Bryan, and Hart flew here in the middle of July. They stayed for almost a week and it was wonderful having them here. I did not take pix and wish I had. They were the first to stay in our guest room so it has since been dubbed "Aunt Betsy and Uncle Bryan's room." Betsy and Bryan rolled with the chaos and were gracious about the noise. 
On Thursday of that same week, Jamie and Bryan took our boys over to Jamie's parents' house. Betsy and I hosted my mom, aunt, and cousin for our second annual girls' weekend. We missed my Aunt Gail but managed to have fun. We slept in, ate out, got our nails done, watched a movie, and even had a craft Betsy brought - we made our own journals. Typing that out makes it sound corny, but it was fun.:) Many thanks to Jim, Betty, Jamie, and Bryan for helping to make that happen. 
The last week of July we headed to the beach with Jamie's family. It was fun. The kids didn't want to go to the beach as much - they were content to stay inside and play or go to the pool. Jono had a tough time - there were storms that he found frightening and a pool alarm on the downstairs doors that really bothered him. His speech has really improved this summer but with that he has been able to articulate many fears - storms and darkness (even going to the movies because the lights go out) - as well as noises that simply seem to affect him significantly - banging, crying, screaming, thunder, dogs barking, etc. With his ADHD, I think he hears everything and is unable to tune it out. While I am SO GRATEFUL he is talking, I find it exhausting to listen to him constantly tell me what scares him or irritates him. The list is endless. Tonight he even said, "Mom, you don't tell me what to do." Excuse me?
This is our first week home where we aren't unpacking or readying for vacation. We will have a street yard sale next weekend and hope to purge our remaining junk. We are good about getting rid of things, in general, but this is our chance to really clean things out. I have lots of things set aside and want to pace myself. Last summer we did a sale and I stayed up way too late pricing things the night before. 
It has been a long summer. June went well - it was rather cool and the boys all had things to do. We also got outside a lot. The last few weeks have been slow and either rainy or incredibly hot/humid and the boys have really gotten on each others' nerves. Jackson does well for a while with all the noise but it takes a toll on him after a while. It has been good for him to have his own room. Our street has been like a ghost town this summer, so if Jackson has not had camps to go to, it has been rather boring for him. I have tried taking them to the pool as much as possible as well as the library. I can't go to places like McWane because they run in different directions. We went to the zoo once with friends in June but the weather has not been very accommodating to entice us back during the day.
Joel continues to make us laugh. He is very dramatic - either squealing/screaming or very sweet. It seems to be one extreme or another. He told me he needed new eyes because the ones he had weren't working well (something was blocking his view of the TV). He is very complimentary, a warm greeter in the morning, and so fun. He can also scream until the cows come home if he doesn't want to eat his dinner. Dr. Jekyll and Mr. Hyde.
School starts for us on August 20th. I have been praying for friends for each of the boys as well as placement for them with their teachers. I often feel guilty for not homeschooling - I see other moms joining the homeschool front and think "I was a teacher - I should do that" but honestly don't want to do it. I think Jackson would do well with it and with all the noise issues Jono is developing, I wonder if he would do better at home. However, I often feel so overwhelmed that I am not ready to tackle that yet - if ever.:) I am convinced that the boys need more structure at home so I am committed to charting out chores and schedules. I am hoping that will help to guide them to be more responsible as well as have more grateful hearts. Jamie and I are both concerned about bratty, entitled behavior these days. I wouldn't mind pulling a Cosby show stunt and removing all of Jackson's belongings from his room, making him get a job to pay to get his stuff back. 
That is a small picture of our June and July. Hope you enjoy the rest of your summer!

Jono at his spring music beach-themed production. He sat for the whole time!


 Jono again.:)

 Joel, perhaps copying his brother?

Up close...

Our nephew/cousin, Hart, after some cereal.:)

Jackson and the boys in his Sunday School class
at Rock the Block at DFMBC this summer.

Hart taking a bath while visiting here. Seven months old.

 Joel's playdoh mustache. He loves playdoh!

 Joel in the sandbox at Friend and Doc's house for his birthday party.

 Jamie putting on a puppet show for the kids.

 Joel turned three on June 4!

 Meredith and Gracie.

 Jackson, Emma, and Eric. Sweet cousins.

 Jono's turn in the sandbox.

 James, Gracie's brother, a few weeks older than Joel.

 Friend and Doc/ Suzanne and Bill. They let us 
invade their home to have Joel's birthday party.

 Bill, Suzanne, Sarah, Jason, Gracie, and James.

 Eric, Jackson, and Joel playing the Wii. Eric and Emma
spent the night with us while visiting here in June. So fun!

 Joel is trying on Caillou's shoes.

 Can't remember if I washed those bowls afterwards...

 Love to get in our winter wear...

 Is this a boy or a girl?

 Joel makes Jono wear our token girl dress up outfit. 
He often wears the pink heels as well but not today.

Mickey Mouse Firefighter Joel. I think he has pink gloves on, too.