Updating September

Somehow an entire month has slipped by - again. Rather than go in and try to write posts for every event we have experienced during the past month, I'll just round them all up in one.

First and foremost - Jacob was chosen as student of the month for his class at the end of August. For the very first month of school! We couldn't be prouder of him and he was absolutely ecstatic when he found out. He has been doing amazingly well in First Grade. He loves his teacher, his class and Math! At Jacob's school, they have "SuperStar Assemblies" every month. The entire school comes, parents are invited and honestly it's like a big party. They recognize the kids that were chosen as students of the month from each grade, they announce winners of various contests they have held throughout the month, a student or group of students will perform and they play fun music and dance! They teachers at his school are young for the most part and they all really seem to love their jobs. They get dressed up in crazy outfits and dance with the kids. It's great that they make learning so much fun. It makes such a difference to the kids when their teachers are happy to be there and make those six or seven hours they spend together every day fun and interesting.

Later in September, we all came down with a stomach bug. It was brutal and none of us were able to escape it. Aaron got it the worst (of course). He ended up getting it three separate times in a two week span. I think we are just now all fully recovered. I am trying not to complain too much because it was the first illness any of us have come down with since school started. Considering our history with germs, we are doing pretty well.

Aaron has made some great advances this month too. He is definitely developing his independence and I have discovered that he does much better at therapy if I am not around. So I have been sitting in the waiting room when we go to therapy at the clinic and just stay in another room when we have therapy at home. We got him a (very large) bean bag chair for his birthday and his Speech Therapist has been very impressed at how much better he is able to concentrate when he is sitting on (in?) it. Because he has so many sensory issues, sitting in the bean bag chair calms him and allows him to use his brain to complete the task she is asking of him instead of going in a million different directions just trying to keep his body in the right position in the chair or on the floor. The physiology of it all is kind of complicated, but I'm just glad it's helping!

I think that now that he is steady and comfortable walking, he is making some great strides in other areas. This isn't an uncommon way for children with DS (or any children really) to learn and develop. When he is really working hard in one area (gross motor, fine motor or speech), the others may lag behind. But now that he is walking well (and Lord help me - nearly running), he has really come a long with with his speech and fine motor skills. Just this week he was playing a game with his speech therapist and he was correctly identifying three different colors - doing the signs and trying to say the words - and then putting the toy "swords" into very small slots with no trouble. It was quite incredible. Just a few months ago he couldn't even make a pincer grasp or put a peg in a pegboard! He is really trying to talk a lot more. It may not be intelligible to anyone but us, but the fact that he is trying and developing new sounds all the time is like music to my ears.

So my mission now is to keep challenging him. I am trying to create different games so he can identify colors and shapes and we are starting to work on the alphabet. Figuring out what he comprehends and what he doesn't is hard since he isn't talking much yet, but I have seen glimpses that he understands a lot more than I may think he does. So I'm trying to come up with activities that he can do so he can demonstrate what he knows without talking.

My first project is going to be a felt color board of sorts. I plan to make a board with three color pockets on it (probably red, blue and green). Then he can put objects that are the same color in the pocket. We may also try attaching velcro to the back smaller objects so he can stick them on the felt pieces. I am going to make it large enough to hang on the wall at his level. He responds so well to visual cues, that I think this will be the best way for him to work on these skills. Of course we will practice saying and signing the colors as well, but this way he can show us what he knows even if he can't say it. Hopefully it will be a success. I'll post pictures once it's complete!

Finally, tomorrow is the first day of October. To most people this means Breast Cancer Awareness Month and Halloween. But to me, October is Down Syndrome Awareness Month! I am going to attempt to participate in the "31 for 21" challenge again this year. Bloggers who are touched by someone with Down Syndrome attempt to raise awareness by writing blog posts about DS every day in the month of October. If you are interested, I'd love to have you follow along and share your thoughts!

Onward and Upward

Today is Aaron's third birthday! It's hard to believe it's been three years since our lives changed so dramatically. In some ways it feels like yesterday, in others it seems like it's always been this way.

We didn't know Aaron had Down Syndrome before he was born. I had the "quad screen" test while I was pregnant but the results came back normal so we thought there was no chance there was anything wrong. We were shocked when he was born and the doctor told us he wanted to have him tested. Even the genetecist wasn't sure, but a week and a half later when we finally got the results back, our fears were confirmed. I'm not going to lie, it was devastating. I knew what Down syndrome was, but I didn't know nearly enough about it. All I could think about was how people were going to be so cruel to him and it wasn't fair. I think I cried for a month. And it took a year before I was finally okay with it. That doesn't mean I was devastated that entire year, but it was hard to accept that life wasn't going to be what I had always thought it would be.
It is hard to explain to someone who doesn't have a child with special needs, but most parents actually go through the grief process when their child is diagnosed with a disability. Even though I didn't lose my child, I lost the child I thought I was going to have. It is emotional and traumatic and we (or at least I) won't ever be the same.

But now that I have had three years to process it and bond with my little boy, I don't think I would change it if I could. Of course I wish he didn't need therapy five times a week. I wish he didn't have so many medical problems. I wish he could eat the same food everyone else eats. But I wouldn't change him. Aaron is the sweetest, funniest little boy I have ever met. Jacob is sweet and funny too of course, but Aaron is different. He will love a stranger almost as much as he loves his family. He blows kisses and gives high fives to everyone he passes on the street. He will laugh and make funny faces a hundred times a day. He has brought so much joy to our lives - and to this world - that it amazes me every day.

That is not to say he's easy to take care of. He is a handful and so much more challenging than his big brother ever was. He has no concept of safety awareness and could care less if he is wandering off by himself. It makes for a very high stress level for me every time we leave the house, but it's just one of those things we have to deal with. Even though he isn't talking much yet, he has recently discovered that he has an opinion about everything. And he's not afraid to let us know. He wants things to be his way and if they aren't, he'll let us know that he is not happy about it. He is walking - and climbing - everywhere. He wears me out, every night I am utterly exhausted.

But he has changed us for the better. I look at the world differently now. And I tend to like this view better. I have come to appreciate every little milestone so much more. And there are so many milestones to celebrate that I never knew about! Who knew it would be so exciting when your kid learns to make the "guh" sound?!

So, I may not have the life I imagined having before Aaron was born, but I can actually say I'm okay with that. I love my little boy and I'm so happy that God decided to make him a part of our family. 

I Don't Wanna Grow Up!

So this week was my 31st birthday. This one didn't bother me so much, after all, it's just another day. Jacob woke me up in the morning and gave me a birthday card from he and Aaron. It was "Kittens From Around the World" Meowing their birthday wishes in several different languages. Quite hysterical. Aaron loved it and insisted that I push the buttons so the cats would meow all day long. Jacob then designed a Scavenger Hunt for me. He gave me some clues to find my "surprise" and when I found it, it turned out to be a picture he had drawn. A picture of a cherry (with a smiley face) that said "Happy Birthday Mama, You are as funny as a cherry". :-)  He was so proud of himself - he must have asked me two dozen times if I liked my gift.
However, the most significant event of the day had nothing to do with my birthday.

We had Aaron's IFSP meeting on my birthday. For those of you who don't know (which is probably most of you), an IFSP is an Individualized Family Service Plan. It's basically where we meet with his Service Coordinator (and sometimes one or several of his therapists) and discuss his goals for the next six months. We talk about what he has accomplished and what he needs to be working on.We do this every six months and they are not usually a big deal. But this one was a little different. It was our last meeting with our great coordinator who we have come to love and have a great relationship with. She works with the Early Intervention department which only services children from birth to age 3. Since Aaron will be three next week, we have to transition to the "Child" department where we will get a new coordinator. The way they work is a little different and we'll have to get to know a new person. I knew this would happen when he turned three of course, but it's still hard. It seems like just when we get used to one thing, we have to change and learn a whole new system. As soon as he starts school (which he will be eligible for when he turns three but won't be going yet) we will have to learn yet another new system. We "get" to start the journey through the IEP (Individualized Education Plan) and do everything we can to make sure he gets the education we want him to have. It's stressful just thinking about it.

We've Got a First Grader!

Monday was Jacob's first day of school - First Grade! He wavered back and forth between excitement and anxiety, but ultimately was happy to start school. He has come home every day telling me how great school was and how he likes First Grade even more than Kindergarten.
His teacher is very sweet and has told me every day that Jacob is such a nice boy and very well behaved. This is her first year at his school, but she has been a First Grade teacher before. One of his best friends from last year is in his class this year. They were thrilled to find each other in the same class at Open House, so I think that definitely helped ease his anxiety.
It's hard to believe that my little boy is already in First Grade. But I'm not really sad about it. I know many of my friends don't want their kids to go back to school or grow up so fast, but I just don't feel that way. Jacob is very active and I think he is so much happier when he goes to school and gets to interact with his friends rather than being dragged around to his brother's therapy appointments all week. I enjoy not spending my entire day fussing at my kids because they are screaming at each other. It's not that they fight all the time when they are together, they are just so loud and active, it is a bit much sometimes. So I guess I'm the mom who is thrilled school has started again! If that makes me a bad mother, so be it. For the record, I think we are all happier when school is in session - even if Jacob won't admit it. :-)

Back to the Grindstone

We have been back in Arizona for a week now. We had a fantastic time visiting our family and friends in Georgia and the time went by entirely too quickly. Who knew a month could fly by so fast?!
Of course the boys have had a bit of difficulty adjusting to normal life again - that is, no grandparents around to cater to their every whim. :-)  But we are finally getting back into our normal routine.
Aaron started all of his therapies again this week. He wasn't exactly cooperative, so it may take a little longer for him to get adjusted to the demands that therapy involves. Luckily, he made a lot of progress while we were gone too.
He got his third set of tubes put in his ears the week before we went to Georgia and they have made a tremendous difference. He had been having problems with his balance for a few weeks but that improved immediately after the tubes were put in. It turned out he had a LOT of gunk in his ears that was certainly impairing his hearing. Since that has cleared up he has started speaking more, putting more sounds together and imitating us all the time. It is so exciting to watch.
Although he will be three in just a couple of weeks, developmentally he is only at about the 15 month stage with his speech. He can sign a lot and is able to communicate with us that way, but to hear him trying to say real words is like a dream come true. It is so exciting for both him and us when he says a real word and uses it properly. Of course it is exciting for any parent when their child first learns to speak, but when you have waited three years for it, it's just that much sweeter.  Hopefully his vocabulary will continue to expand quickly now that he can hear!
Today is also Open House day at the elementary school. We'll find out who Jacob's first grade teacher will be, which of his friends are going to be in his class and see his new classroom. I am definitely more excited about this than he is, but I'm hoping once we get there and he sees his friends again, he will be excited too. School starts on Monday, so he'll be back to his routine soon whether he likes it or not!

Goodbye Atlanta, Hello Savannah

Yesterday we made the four hour trip from my parent's house in Atlanta to Matt's parent's house in Savannah. My mother and his father were kind enough to drive us to/pick us up in Macon so we wouldn't have to rent a car and make the trip alone. But it was still as terrible as I expected it to be.
Aaron just doesn't tolerate being strapped into a car seat for hours at a time and he has no problem letting us know how displeased he is. So he cried and screamed and threw most everything we handed to him for pretty much the entire trip. It was horrible and if you are ever unfortunate enough to have to travel with us, you will understand.
But we made it here and we all survived. I'm just glad I have blonde hair - if I'm going gray, you can't see it yet! We will be here in Savannah for another two weeks before we head back to Phoenix. Matt will be joining us next weekend and flying back with the boys and I, so hopefully that will make the trip at least a little easier.
While we are here we are hoping to spend time with family, see some friends, eat a lot of delicious seafood, see Harry Potter (okay, maybe that's just me) and enjoy our visit to one of the most beautiful cities in the world. 
I wasn't able to see everyone that I wanted to see while we were in Atlanta, so if I missed you, I am very sorry. Two weeks went by entirely too fast, we may have to make our trip a little longer next summer!

What Is SPD?

Last week I took Aaron to the Down Syndrome Clinic here in Atlanta for our yearly visit. After discussing his behavior and changes in medical status over the past year, his doctor started talking to me about Sensory Processing Disorder (SPD). He has always had a very mixed response to certain sensations, but has never been officially diagnosed with anything related to that. However, after talking about some of his symptoms, it seems more and more likely that he has it. I have heard of Sensory Processing Disorder, which is sometimes called Sensory Integration Disorder, but don't know much about it.

From what she said and what I have read since then, it is basically an inability to cope with certain stimuli. Most people can avoid sounds, lights or other things that bother them, but Aaron doesn't know how to do that and instead "acts out" or cries when he is uncomfortable. It can be difficult for him and for us to figure out why he is unhappy but hopefully identifying this disorder is a step in the right direction.

Apparently there are even Sensory Therapists who can help him deal with these sensations that he is overwhelmed with or averse to. So our latest adventure is to find a Sensory Therapist when we get back to Phoenix so we can start helping him cope with these things. Right now, it's things like brushing his teeth and brushing his hair. And hopefully getting started with therapy now will help us avoid problems over the next few years, especially when he gets to school.

It is certainly not an uncommon problem and there are ways we can manage it. We'll deal with this like we have dealt with everything else that has been thrown at us, one day at a time.