Friends for Life?

Okay so for those of you who don't personally know me, I'll explain. My mother in law, while she means well, can be a thorn in my side. She is old school, I know, but when you have a grandson with DS, you should really take the opportunity to get updated on your information. There have been several ridiculous comments made by her over the years, including-"he only has a mild case of Ds", and oh, Cameron is much smarter than the other kid with DS. Well I have about had it with these comments. First off, let's understand that there are no degrees of Down syndrome. Either you have Down syndrome, or you don't. Cameron DOES have Down syndrome. He doesn't have a mild version and he faces challanges daily because of this extra chromosome. Second, I don't compare my typical children to other typical children when it comes to intellect and I surely don't plan to start doing it with Cameron. Just because there is a teenager at your church with DS who may be lower functioning, doesn't give you the right to compare them cognitively to my son. I only hope that her failure to use common sense hasn't occured in front of this individual's parents. Today she comes over and invites my oldest son to church tomorrow. He is 11 and he made the decision to go. Now our family doesn't go to church at the moment. Not because we don't believe but because 1- we don't have a church we like yet and 2- things have been so hectic. Now my mother in law is not capable of taking care of a small child like Cameron, DS or not and she has acknowledged this. However today she shows up wanting to take Cameron to church tomorrow. I told her he would not be going to church with her tomorrow that he would be staying home with me and she got pretty irritated. She said that going to church will allow him to make friends that he will have all his life.....people who will pray for him and check up on him, not like the friends he has at school. Now maybe I'm being over sensitive, but what makes her think that Cameron doesn't have friends right now that he'll have all his life? Is it possible in some abstract universe that Cameron, even with his extra chromosome is lovable, friendly and very social and has many friends that love and care and even pray for him. I am trying to not take this so personally, but I would like to think that family could get the ridiculous stereotypes out of their heads. I mean I'm asking strangers to consider Cameron a person first, yet his own family doesn't.

Perhaps for Christmas this year, I'll give her some updated reading material on the "abilities" of people with Ds.

Behavior Issues

So recently, I've been approached a couple times regarding parenting and disciplining a child with special needs. The people approaching were not making snide remarks, they were actually complimenting me on how well Cameron behaves. Cameron's speech therapist (whom I love) recently told me that she and Cam's other therapists think that I am great when it comes to Cameron and his behavior and they wished that more parents were this way. A week or so later, a parent (of a child with DS) approached me asking what I do that has been sucessful. First, let me give kudos to Cameron himself. He is a very easy going child and he is very intelligent. That being said, he also knows how to work people and is a master manipulator. And let's not forget he's 4. My approach is simple. I have always treated Cameron the same way I treated his older brother Alek. While Cameron does have special needs and sometimes lacks the understanding that say his typical peers would, he does understand right and wrong. I think too many times (and I have witnessed this) parents let their children with special needs misbehave because they feel sorry for them or think that they don't understand. This usually makes the issue worse and you end up with a child you cannot take out in public. (Again, I have seen this first hand). Cameron has the same rules as I would give any of my children. Simple. Be respectful, use your manners, and do as you are told. I'm not saying that Cameron always does as he is told, but usually once I make eye contact with him by getting on his level, I have no further problems. Occasionally when Cameron is feeling extra hard headed, I do have to use the time out spot. This is a spot in our hall way where Cameron is out of the loop of what is going on and being that he is so social, this is a real punishment. Typically after the time out is over, Cameron- on his own, will apologize and go on his way. While this works for us, I realize that it may not always be as simple as this for others. There are all kinds of variables, including dual diagnosis, that may make these things a little more difficult. The point of my post is that we spend a lot of time wanting people to treat our kids the same as they would any kid, yet as parents we don't always follow this advice. I think it's important to remember that when it comes to behavior, don't underestimate your child and their understanding of right and wrong. I assure you that they will quickly pick up on this and take advantage of it. That's all from Dr. Strickland today. Thanks for tuning in.

How do you get it all done?

It seems that there is so much to do and simply not enough time to do it. Let's break this down. There's oral motor, physical therapy, speech therapy, occupational therapy, not to mention learning letters and numbers and trying to teach site words. Sometimes, I don't even know where to begin. I have gotten back on track with the oral motor exercises (I have no choice because Cameron makes me do them:). And I try to do educational things throughout the day. I have flash cards and we have games etc. We are also working on cutting with scissors, lacing or threading and isolating fingers. My struggle is getting myself organized and getting some of these things accomplished on a daily basis. Perhaps I need a clone. Another mother to help get it all done. Maybe she could do the cleaning, cooking, working and changing poopy diapers. I'll do the other stuff.

"Self Mama"

Cameron has been claiming independence lately, which is great. I'm not complaining at all. It's a real treat to have him feeding himself which gives me either the opportunity to feed myself or the other child who still needs help. Cameron insists on feeding himself by saying "self Mama" everytime I put a meal in front of him. What isn't so great is the end result. No wonder the kid is still hungry after his breakfast......

This is blueberry yogurt. I think at least half of the container is on his shirt. And to top it off when he was done, he wiped his hands on the shirt as well. Surely didn't hurt did it? So here's to independence and to boys. Cause extra chromosome or not, they are so messy.

Getting back on Track

So the last 6 months have been crazy. I had a baby, back surgery, Christmas, Cameron's surgery, and a death in the family. I have done my best to keep up with everything including work, Cameron's appointments and all the other family needs all while Robert is still working away from home and gone 5-6 days a week. What I have failed on is keeping up with Cameron's oral motor therapy. For those unbelievers out there, oral motor exercise has proved to be very beneficial. I can tell you firsthand that it makes a world of difference. Perhaps if I hadn't lapsed, I wouldn't notice the difference. Since I have not been doing it (bad mama) we have noticed a couple of things reappearing......drooling, jaw jutting and increased sensitivity in his mouth. I discussed these things with Cameron's speech therapist today and also his Occupational Therapist. They both agree that oral motor exercise is the key to this. And while I hate to admit it, it seems that my failure to keep up the routine has caused this backslide. Tonight we got out the trusty Talktools Toolbox and did the z-vibe, some stretching and some chewing. Cameron's favorite exercise tonight was definitely the horn blowing. Good thing Rylee is a sound sleeper! Hopefully getting back into the program will remedy these problems. If only there were 20 more hours in every day!

"Fine Ever"

It's amazing what children pickup. What you don't always realize is that they listen to every word you say. And while most times they repeat it immediately, they sometimes keep it locked in their very intricate brains to be brought out at a later time. A most appropriate time! Just a few things to consider. Sometimes the words they repeat are not supposed to be said by children. Like the time I dropped something in the kitchen and said "son of a " and I actually stopped myself. However, Cameron finished the statement for me. He had never repeated the word before, but had brought it out at the appropriate time.  Good thing we were at home. Today, I was trying to get him to the door to wait on his bus. I know I called him at least 5 times. Finally, I said get to this door or you're gonna get  a spankin. His response was simply "Fine Ever". Translation- Fine Whatever.  I couldn't help but laugh. Especially since I know I'm famous for saying this to just get through a conversation. Outta the mouths of babes!

How Far We've Come

We had our 6 month check up with our favorite developmental pediatrician last week. Like I've mentioned in before posts, he is my absolute favorite doctor. He is always positive and very energetic. I never leave there feeling sad for the things Cameron isn't doing, because he always makes sure to point out how well he is doing in certain areas. So since our last checkup six months ago, Cameron has made significant progress. He is now walking......and running. He is using 3-4 word sentences. He can recognize most of his letters, all of his colors and is answering questions like a pro. The doc was very impressed at what he's accomplished in the past 6 months (not as much as I am) and said that cognitively, Cameron is not far off his age. We already knew that. The doc was very excited to tell me this and also to mention that while people assume that children with DS are always affected with severe intellectual disability, this is simply not true. He told us of a boy who just graduated high school with a regular diploma and now works a "regular" job. It was touching for me to see his excitement when he told me of this. It was far more touching when he teared up telling me that when this particular child was born, his mother was told to put him in an institution. While I'm glad that it is no longer standard to tell parents to place their children in institutions, I'm still saddened that there aren't more doctors out there like ours. If there were, perhaps there would not be so many people choosing abortion when they get a diagnosis of DS.

I'm Back

Things have been crazy busy around here for the past couple of months. I think now they may be settling down a little. At least enough to maybe post on my blog which is starting to collect cobwebs. Cameron's surgery (a month ago) went well. It was a tough week or so after though I will say. He had to stay overnight in the hospital which I was thankful for since he literally refused to drink. That was the toughest part was getting him to take fluids. And although Cameron is usually very good about taking medicine, even that was an awful fight. I do have to say that CHKD is very good and I was impressed with how well they took care of him, even allowing me to go into the OR with him until they got him to sleep so he wouldn't get scared. And he looked so cute in his yellow pajamas.....

Then just 20 days after his surgery, he had his 4th Birthday. We didn't have a party. I did take cupcakes to the school for all of his friends to enjoy. They were so cute and I really wish that my unorgainized self had taken a camera to get some pictures of those faces! We let him choose where he wanted to eat that night and he wanted the mexican restaurant across the street (I promise I had no influence over this). Everyone who works there loves Cameron and even our waiter participated in the events.....

We invited the grandparents and some other extended family and Cameron ahd a terrific time. I can't believe he's 4 already. It seems not that long ago that he was just a baby. A tiny little baby who had a hard time drinking a bottle. Look at him now~!~

I'm so proud of my little boy and all he has accomplished in this past year. I could go on all night about all he has done over the past year. We love you so much Cameron~ You're the best.