Sunday, May 31, 2009

He's Four

Jake turned four years old yesterday. We pretty much did whatever he wanted all day, all along assuring him that we were having a real party next weekend. When we asked him what he wanted for his birthday he says "Party, cake, friends, music!" So we are having a mini-festival and hiring a bluegrass band. I think that qualifies.

Manny's MRI is Tuesday morning first thing. I am spending tomorrow getting the house and other things in order in case something crazy happens and we end up living at the hospital for a year. You never know. People keep asking me what I think it is... and I have no idea. I guess I almost hope that they find some "fixable" thing. I honestly would take that over "nothing".... meaning that he is just going to have these problems for a long time. I know that toddlers get bumps and bruises, but he falls so much that I'm beginning to get a lot more protective than I have been in the past. I'm really afraid that he'll hurt himself.

I will write about the outcome as soon as I can.

Tuesday, May 26, 2009

Visit with Dr. Michaels

The morning went very smoothly. Jake was happy to stay with Cindy for the first half-hour of our wait, which bought me a little bit more waiting room time with just Manny.

I told Dr. Michaels of my concerns and after he observed Manny I didn't even have to think about suggesting an MRI, he simply said that it should be done, and soon. We have an appointment at T.C. Thompsons in one week for an MRI which will be done under anesthesia.

I also talked with him about Phelan-Mcdermid syndrome (22q13 chromasome deletion) and to my surprise he felt that I very well could be right. Although he doesn't really know much about this "rare" disorder, he listened to my list of symptoms that fit both my own children, and Steve's relatives and thought that investigation into that diagnosis seemed valid. After I voiced my concerns over family history of kidney issues and Manny's own stomach pain issues (he often brings your hand to his belly for rubbing) he suggested that we also do an abdominal ultrasound while he is at T.C. Thompsons for his MRI. Although polycystic kidney disorder and other kidney issues can be asymptomatic and don't neccessarily cause pain, he thought that since kidney problems/missing or underdeveloped kidneys are also a symptom of Phelan-Mcdermid, it wouldn't hurt to check now.

We are getting an appointment to have Manny's hearing checked. Although I know that he can hear, I wonder sometimes if he can hear well. A hearing check can't hurt.

I think thats all..Oh, he wants both children to see a dentist since they both have never been. I'm putting that on the back-burner for the time being for obviously reasons.

I only returned home from the appointment a few minutes ago. I am not at all surprised at the outcome of this appointment, but I just need a little time to process it all. I am glad that we can get the MRI done in one week.

Monday, May 25, 2009

Memorial Day....

.... it is Jake's Birthday "observed." Jake will be four next Saturday, and was born on Memorial Day. I am looking forward to his birthday celebration this year because I know that he will truly enjoy it and "get it" although it is hard to communicate to him that his birthday is coming up. If I ask him "What do you want for your birthday?" he gets excited and says "Birthday! Birthday cake, candle, friends!" He knows what a birthday party is, but I'm not sure he'll understand that its HIS birthday party until he's actually there and it is happening.

Birthdays are tough sometimes because I can't help but think about where my kids "should be" developmentally. They can also be tough because I have no idea what to give my own child for his birthday. Socially I am asked (and he is too) what he is getting as a gift. I don't know what to say... I figure that "birthday cake, candles, friends" are what he really wants. We actually have something extremely special planned for the weekend after his birthday. I think he will LOVE all of it.. more to come.

Tomorrow Jake has OT at 8:30 ande Manny has a re-check appointment with Dr.Michaels at 9. Cindy says that she can keep Jake with her for the first half hour at least, and bring him to me if she has a 9:30 appointment since Dr. Michaels office is in the same parking lot. I am probably due for another half-panic attack with Dr. Michaels.

Manny's balance is getting worse. He can barely walk 2 or 3 steps without falling. He was trying to watch something on TV today and was staggering around like a very drunk person trying very hard to hold his gaze on the television, failing miserably, and then falling. At another time this weekend, he was holding onto the couch and suddenly looked as if the ground moved under him and fell over backwards from a supported position. I am very frightened by this. "Vertigo" is a term that comes to mind.. he seems very very "dizzy." I am thinking that if Dr. Michaels doesn't suggest it himself, that I may suggest an MRI. Something inside of my gut tells me that we shouldn't wait.

More tomorrow.

Thursday, May 7, 2009

Summertime and Relationships

Its been a month since I posted and thats just simply because we have been so busy. A trip to Cairo, GA for Steve's Grandmothers funeral late last month went very well. To save money we stayed in our big tent in the yard at the family farm. The kids did very well while at least 100 people moved in and out of the home and yard to celebrate the passing of Granny Kinchen. I was very proud of both of them. Jake was friendly and happy to talk to everyone. The kids slept well as did we for the first night. After the funeral the next day we traveled to Kevin and Ariannes again and spent two more nights. They have two boys and between that and a kiddie pool, everyone had a blast.

Last weekend was the Annual Boxcar Pinion Memorial Bluegrass festival. We have attended this festival for the past three years, and I tell you, It is a remarkable gauge as to how well Jake is doing. The first year was so hard, as I was pregnant, exhausted and Jake was utterly impossible to handle and simply ran in any direction and responded to nothing that we said. Last year was a little better, though Manny was a tiny infant and Jake was still exhausting to deal with. He would run in giant circles and leap upon strangers. We only stayed the first night that time, nobody slept.

This year Jake stayed very close to wherever we were, within reason, and probably comparable to many children of the same age. He would ask for popcorn, and I would give him 50 cents and watch him go to the food stand, hold out his money to the ladies, and say "Popcorn please!" At night Jake would put himself to sleep, and Manny would go to sleep in his co-sleeper. They were so worn out from playing that both boys slept all night two nights. Of course they woke up between 5 and 6 AM as usual, but whatever, right? They even weathered out several storms in the camper without getting TOO much cabin fever. We would have stayed the third night, but it promised to rain all day, and I just didn't feel like they could have handled another day in our tiny 13 foot trailer. If the weather had been better, we would have definitely stayed all three days. I was overjoyed to hear Jake ask "Go ride wagon? Go down and see music?" Near the stage is his favorite place. You just can't understand how happy that makes me, on so many levels.

Manny continues to lose motor planning skills and has lost all of his speech. I am beginning to accept the fact that he will have difficulties just like Jake, even though he doesn't exhibit all of the same autistic traits. I plan to have him evaluated by early intervention soon, and the genetic testing for both boys is scheduled for July 21st. I have other concerns that are beginning to crop up in my head, although I haven't mentioned them to anyone yet. Hopefully I can find the strength to do so soon.

During my journey over the past four years with Jake and Manny I have been lucky enough to meet several adults who have been diagnosed with ASD, many of whom are in their teens or twenties. I am astounded by the range of issues that these adults have. Some loving and caring and social with limited cognitive skills, others who are highly intelligent but lack social skills and the ability to form strong connections and who are borderline (or complete) sociopaths. Sometimes crossing paths with these people makes me very hopeful, and sometimes it scares me to death. I would so hope that Jake can be the former, not the latter. Sometimes I wonder what the difference would be if I just ran away, and if not actually physically run away (though the thought occasionally crosses my mind), to mentally run away. To just give up on him and stop trying. Stop dragging him to OT, stop dragging him to social events, stop trying to engage him, just shut off my feelings of responsibility and simply let him stim in his room while I took care of myself and other things that would be easier or more rewarding. No, I'm not going doom him to a life of thinking that he isn't good enough, that he wasn't worth it, that he wasn't worth every bit of my love and time. I guess some of my worst experiences meeting people with ASD has actually strengthened my will and determination and love for my sons. I want them to be good members of society and more than anything, I want them to know the importance of family and friendship.

How do I know that these things are inside of Jake? "Goodbye friends! Thank you!" he will say and sign when some children leave the playground after including him in a game of ball. "I'm sorry mama, no wan hurt the mommy." after he forgets, once again, that my hair isn't something that he can remove and take with him to play with. "I love you TOOOOOO!" is his response to "I love you, Jake." Sometimes I feel like he's scripting, other times he is sincere and uncoached.

Today Jake appeared at the top of the bus stairs holding out a disheveled bunch of weedy flowers. It was the first time he has every brought me flowers, and I was overjoyed. Now, I know that he was probably told to bring me the flowers, but that wasn't the point, it was his reaction to MY reaction. When I took them and squealed with delight, the display of hand-flapping, giggling and stomping was undeniably genuine. It made him happy to make me happy. I love him so much.

Happy mothers day to all the moms. You are special people chosen for a very special purpose, a job that only you can do.