Wednesday, December 21, 2011
His sensory processing problems make traveling a complete nightmare for all involved (including the 100+ other passengers on the plane), but mostly for him. When your body doesn't know how to process new sights, sounds and motions, being strapped into a car seat where you can't move for four hours on a plane full of strange people, sounds, sights, smells and motions is pretty horrible. I dislike flying for many of those reasons and I don't have any sensory problems. I can only imagine how terrible it is for him.
Luckily we have a very understanding family. Matt's parents were able to come visit over Thanksgiving and my parents will be here on Christmas. We will miss seeing our siblings, grandparents, aunts, uncles, cousins and friends but we are lucky that our parents have the ability to come spend the holidays with us. I know many families who aren't as lucky. Either because their families can't travel or they don't "get" why the child with special needs can't travel.
So, as I'm counting my blessings this year (and there are many, even though it has been a difficult year), at the top of my list will be the blessing of a loving, understanding family who has always been there to support us no matter how bumpy the road has been or how far away we are. It is not lost on me how much you mean to all of us.
Right after that will be the blessing of caring, supportive friends who are always there for me when I need to talk or vent. Even if you don't completely understand what I'm going through, it means the world to me that you will take the time to listen to me and try to sympathize.
I think I will save the rest of my blessings for another post, but this deserved a post of its own. And if you are reading this, you are probably one of those people, so thank you, we love you all!
Thursday, December 8, 2011
The other girl I hired came for the first time yesterday and I was equally pleased with her. The whole morning went smoothly and both she and Aaron seemed comfortable. I was able to get a lot of work done and definitely felt more relaxed than I do on a normal day.
Both of them have already needed to cancel once on days they were supposed to come, but they both had significant and legitimate reasons. Hopefully it was just a fluke that they both happened within a week of each other and things will go more smoothly from here on out. Time will tell I suppose.
I am so glad it has worked out so well thus far. I don't want to get too excited, because I know as soon as I get comfortable something is going to come up and throw our routine out of whack again, but having this time is such a blessing to me. I can already tell that I am happier and so is Aaron when we aren't together 24/7/365. Having just a few hours on a regular basis makes such a difference. I can concentrate on other things I need to do without him pulling on my arm every 30 seconds and he gets undivided attention from the respite providers. I feel like I am able to devote more attention to him when we are together too because I'm not constantly trying to do everything else that needs to be done. Everyone told me I would say this, so I'll go ahead and say it : I should have done this sooner!
Thursday, November 17, 2011
We have come to the conclusion that a soy allergy/intolerance is to blame. Every time he drinks soy milk (which was the only thing he could drink other than water since he can't have regular milk) or eats anything with soy in it, he either vomits or screams with unbearable stomach pain.
Of course, similar to gluten, EVERYTHING has soy in it. Even half of the gluten free food we (used to) buy is made with soy flour, soy lecithin or some other derivitive of soy. So, Aaron's diet now consists of fruit, Chex cereal and the two kinds of gluten free crackers I have found that don't contain soy. Not exactly well balanced. He refuses to eat meat and most vegetables(although last night he ate chicken and broccoli - it was a miracle - and probably a one time thing) and won't take any of the dozens of vitamins I have tried to give him.
I am pretty much beside myself with stress about what the heck I am supposed to feed him now. To make it worse, he's three, very picky and doesn't understand why he can't eat what everyone else is eating. And putting the rest of the family on a gluten free, soy free, dairy free diet isn't exactly practical.
To add to the apparent entertainment of the medical ailment gods, we are going through allergy testing now and his test today showed that he may be allergic to peanuts and corn. WHAT THE H*!? It's not definite yet, so all I can do is pray that today's result was wrong. He doesn't like peanut butter anyway, so that one doesn't stress me out quite as much, but corn?!?! His grains were already limited to rice, potatoes and corn and if you take away corn - I really don't even want to think about it.
Alright, I'm done whining and complaining now. I will deal with it, just like I deal with everything else that gets thrown at us. But sometimes I just want to say - enough already!
Wednesday, November 9, 2011
We are also in the process of trying to find a respite provider for Aaron and who knew how much time that would take up! Once we got the hours approved, my phone started ringing with dozens of offers from companies that have respite providers available. So now we get to start the process of weeding through them all, interviewing and choosing the best person for us. Interviews start tomorrow - wish me luck!
Halloween was a lot of fun for all of us. Jacob has gotten into being "scary" this year and decided he wanted to be a vampire. It was an easy enough costume. I found a black cape with a red lining at Michael's and he wore a white button up shirt and black pants. To add to the effect, we painted his face white/gray and painted blood dripping down his chin. He wore one of the half dozen pairs of vampire teeth that he owns and was a happy camper. I must say, I think he made a pretty good vampire.
We went trick or treating with one of his good friends from school, Ethan. He and Ethan also happen to share the same birthday - and his parents are named Matt and Kristi. Same spelling and everything - crazy, I know. Aaron dressed as a pirate and we pushed him in the stroller around the neighborhood. We had planned to let him get out and walk to a few houses, but there were literally HUNDREDS of kids on just one street in our neighborhood and it was just too hectic. He had a great time just looking at everyone though. Jacob loaded his plastic pumpkin up in a little over an hour and we headed home. It was a bit crazy since it was a school night, but we all had fun and we'll have enough candy to last until next Halloween at least.
In an effort to keep this post from looking more like a novel, I will write about Jacob's birthday party and the rest of our week in a separate post!
Tuesday, November 1, 2011
Just because the month is over doesn't mean I won't be blogging anymore of course and I hope you'll continue to read along.
Aaron has brought so much to our lives but the greatest gift he has given us is a new perspective on life. There is no way to really explain it adequately. He gave me the ability to see that the world is so much bigger than I had come to believe. That what is going on in my little world shouldn't consume me. That there are many, many people out there who are still discriminated against because of their "disabilities". That I can make a difference, even if I am just one person. If I make a difference in just one person, it is still a step forward. That I can take something that terrified me just three years ago and turn it into a passion that I will work tirelessly for. That even though people with Down Syndrome look a little different and learn a little differently, they absolutely deserve a chance at life and they make a positive difference in this world. I have no doubt that my little boy is going to grow up and do great things.
Thank you for taking the time to read my blogs and for supporting my family!
Thursday, October 27, 2011
When we moved to Phoenix, I just assumed there would be something similar here. It's a big city, so surely it must be the same, right? I found an group online that I figured was the Phoenix version of the DSAA. But when we got here, I discovered that the group I had joined has most of it's meetings on the other side of town, in the Scottsdale and Tempe areas. Then I found out that there is another Down Syndrome support group that ALSO meets on that side of town.
Honestly, I still don't get it. Why two different organizations that claim to do the same thing? Why not join forces? Surely they could better benefit the community that way. And living out here in the West Valley, I still feel like we are virtually left out of it completely unless we want to drive an hour to get to a meeting or event. I spend enough time driving, I really don't want to make that drive too. There is no Down syndrome clinic here either. That's not such a big deal. There is a Special Needs Clinic at Phoenix Children's Hospital that we go to. We actually get to use our doctor there as our regular Pediatrician. We love Dr. Wendy, she is very knowledgeable about DS and she is amazing with both of my boys. I would still like to see a Down syndrome clinic though. Somewhere that families could come on a yearly basis - especially those families who don't have the luxury of coming to the Special Needs clinic because they live too far away.
I really think the people of the West Valley could benefit from some programs for our families and kids too. This is a big city and we shouldn't have to drive to the other side of town just to get information and support. One of the DS groups says they have a West Valley chapter, but I haven't seen any events over here in a long time. Honestly, I'm kind of at a loss as to what to do about it. I am frustrated by the separation of the two groups. I would just start my own group over here in the West Valley, but what good would that do? Then there would be three DS organizations in Phoenix and that would leave our community even more divided!
I think it just irritates me because I know how good and powerful it can be and I just don't see that here. Any ideas or suggestions would be appreciated because I'm just not sure what to do at this point!
Wednesday, October 26, 2011
Last year, Laura took on the enormous task of bringing an amazing program to Arizona called "Lose the Training Wheels". She worked so hard and raised a ton of money to be able to provide this camp to children with disabilities in the Phoenix area. They spent a week last winter with these children and taught them how to ride two wheelers using a progression of adaptive bikes.
To you and me, this may seem like no big deal. But it is a huge deal to the majority of children with a disability. 90% of people with Down Syndrome and 80% of people with Autism never learn to ride a bike. But this program can and does make it happen - usually in under a week! This simple skill allows our kids to feel like and fit in with their peers. It helps improve their confidence and independence in a very short period of time. It's one of those simple things that so often gets overlooked in a child with a disability. But the rewards when you take the time to focus on that skill are immeasurable.
Laura is bringing the camp back to Arizona again this winter. It is a lot of work for her, but it is so rewarding when the kids that come to the camp accomplish that goal of riding a bike.
She still needs help though. If you can give anything to help make a child's dream come true, I know she and those kids would be forever grateful. You WILL BE making a difference - please help if you can! (If you choose to donate through these links - be sure to specify that your donation should go to LTTW-AZ)
Here is a better link for donations (sorry, I couldn't get it to work when I posted this last night) - 2011 Team Nicolas.
We still need to raise $15,000 in less than two months - any amount helps!
Tuesday, October 25, 2011
I suppose he is a typical three year old in that respect. He refused to eat anything I offered him (but of course ate everything I had put out for him when his Dad fed it to him), told me he wanted a bath but then screamed the entire time, wiggled like an oily piglet when I was trying to get his pajamas on him and threw a fit when I tried to get him to use his inhaler. I couldn't get him into bed fast enough.
So, once again, I feel like a failure of a mother because now neither of my children will listen to me. Please tell me I'm not the only one.
Monday, October 24, 2011
Tonight as I was putting Aaron to bed, I had a few minutes to think about how lucky I am to have - and appreciate - these moments. His developmental delays can be really stressful because it takes him so long to get past those difficult stages (hitting, biting, screaming. etc) that all kids go through. But I get more of the sweet moments too. He was the happiest, most cuddly baby I have ever seen for at least the first 18 months of his life. And even though he's three now, he's still my baby. I can still rock him to sleep.
And even though it takes him a lot longer to learn those skills that most kids acquire so easily (like walking and talking), when they do come, it's like magic. I really can't describe the feeling I get when he meets another milestone. I was proud of Jacob when he did those things, but you just take them for granted when you have a typical child. You get excited for a day or two and then it's on to the next milestone. But when Aaron learned to sit up, crawl, stand and walk, it was like time stood still. We had waited so long and worked SO hard to make these things happen, it was just an unbelievable feeling when he actually did them. I feel like I have been given a gift because I am actually able to appreciate and cherish these moments because I know how much it took to get there.
There are so many more of those moments with him too. Instead of just focusing on those major milestones, we have dozens of other "smaller" milestones to meet in between those big ones. And each of those are just as exciting and important. They all take work and he can't accomplish the bigger things before he does the smaller ones. All kids have to meet these smaller milestones, it's just that they come easily to typical kids and we don't realize they have even happened.
These moments of joy may not seem like a lot, but I think it's so important to look for the silver lining when life it hard. Raising a child with Down Syndrome (or any developmental delay) may not be easy, but it will always be worth it.
Friday, October 21, 2011
He is particularly fond of 80's music and anything with a good beat. If he hears a song that has a good beat, he will come running from anywhere in the house and start dancing and laughing. He loves to watch The X-Factor and American Idol. When he sees and hears people singing on tv, he is entranced.
I have written before about his sensory integration problems and music is one way we deal with it. When he gets difficult or starts to get out of control, if I sing to him, he will usually calm down. It doesn't always work. If he is too worked up, he just gets mad at me, yells and shakes his head at every song I try to sing. But if I happen upon a song he wants to hear and he isn't too worked up, it will calm him down - just like magic. For example, he hates getting into his car seat. He fights me pretty much every time we get in the car. He wiggles and twists his body in unimaginable ways (the low muscle tone and loose joints make that possible) and if it weren't for music, I'm not sure I would ever be able to get him in the car at all. But if I start singing his favorite song, he looks at me and stops fighting. It is amazing.
He loves every kind of musical instrument he can get his hands on. He "sings" into his microphone, plays the drum, the keyboard, the xylophone and anything else he can get his hands on that makes any sort of musical sound.
I love that he already has such a strong love for music. I hope he doesn't lose it. Luckily, chances are pretty good that he won't.
Thursday, October 20, 2011
Of course the day went downhill from there. After Aaron's nap, we went to Sport Clips so both boys could get hair cuts. Jacob did great but Aaron was having no part of it. We have been there two or three times before and he has gotten a hair cut without any serious issues. But it didn't work out that way this time. Despite all of my best tricks, he cried and yelled the entire time and we left without a hair cut. I suppose the lesson I learned this time is that we shouldn't attempt hair cuts in the evening. Hopefully we can recover from this experience and try again sometime in the next week or two. He definitely still needs a hair cut!
Hopefully tomorrow will be a better day...
Wednesday, October 19, 2011
First, a little background. For those of us who have children already, you may remember being offered the chance to have a quad screen (or something similar) around 16 weeks or so. This blood test "screens" for the possibility of a chromosomal abnormality in your unborn child. It doesn't just test for Down syndrome, it also screens for the possibility of other chromosome problems. Some are far more serious than DS and often result in the baby not surviving until birth. I have always been a proponent of these screening tests because, personally, I want as much information as possible so I will be prepared. I have always looked at it like, if my unborn child is going to have a medical problem, I want to know about it ahead of time so it isn't a shock when the baby is born.
However, my experience didn't work out that way. I had the blood screen done when I was pregnant with both of my kids and both of them came back normal! When my doctor called to tell me the results from the test when I was pregnant with Aaron he said my risk was "slightly higher" than it should have been at my age but not enough to be concerned about. If you are considered "high risk" from the results of this test your doctor may recommend an amniocentesis to give you a definitive answer. I knew going into the test that there are a lot of false positives, meaning women are told they are at high risk just to find out later that their baby is perfectly normal. So in my mind, when my doctor told me everything looked good with the test, I thought it meant there was no chance my baby would have any kind of chromosomal abnormality. Obviously that was wrong.
So to me, the test is kind of pointless now. They told me everything was fine with my baby, none of the ultrasounds picked up anything abnormal and he was diagnosed with Down Syndrome after he was born. We went through a lot of grief after he was born. There's nothing like getting life changing news that you think is completely devastating on what should be one of the happiest days of your life. I know now that the diagnosis wasn't as devastating as it seemed at first, but I still think it would have been easier if we had known before he was born.
On the flip side, a staggering 90% of women who do get a prenatal diagnosis of Down Syndrome choose to abort their babies rather than continue with the pregnancy. This would never have been an option for me and it absolutely appalls me that this number is so high. I understand the devastation and confusion and grief that these women feel, but they don't have the benefit of seeing and holding and bonding with their little angel before they make their decision. Far too many doctors actually encourage women to choose abortion when they get this diagnosis. In my opinion, it's just a lack of education among women and OB-Gyn's about what life is really like for our children and their families. We have Down Syndrome communities across this country working hard to educate people about the benefits that people with DS bring to this world, but the message hasn't reached far enough. No woman should have to be told that there is something wrong with her unborn child and then immediately be asked if she would like an abortion. In that moment of fear and hurt, if that is the only option that is provided to her, she may think that is the only choice. It seems like a dark and unlikely scenario but I know FAR too many people that this has happened to. Instead of being offered an abortion, she should be offered counseling, information about raising a child with Down Syndrome and time to think about what decision is right.
To complicate the issue even more, there is a test that should be available to pregnant women in the next year or so that will diagnose definitively whether the unborn child has Down Syndrome or another chromosomal abnormality though a simple blood test (no amnio necessary) and it will available earlier in the pregnancy. I would like to think it will give families more time to cope with the diagnosis before their baby is born, but in reality, it is probably going to mean the abortion rate is going to increase even more. Without the risk of a miscarriage from the amnio and the ability to detect the disorder earlier in the pregnancy, people will choose to terminate their pregnancies and try again, hoping next time they will get that "perfect child".
Just thinking about that makes me both sad and angry. That so many babies like my son were never given the chance to live and that it will probably get worse in the future.
Having a son with Down Syndrome has really changed the way I look at my children and at the world. When our kids are born (and even before) we start planning and dreaming about what their lives will be like. We do everything we can to help them achieve their dreams. But no matter what we do and what we hope for, none of us knows for sure what the future holds for our kids. You can push your child and give him everything and hope that he grows up to be a doctor, but that doesn't mean it is going to happen. In fact, it's pretty unlikely that it will. I think having Aaron has actually been a blessing because I am able to look at my children and realize that they don't have to grow up to be geniuses that cure cancer, I just want them to be happy. And there is absolutely no reason that Aaron can't grow up to do just that and more.
Tuesday, October 18, 2011
It was so nice to get out of town and not think about anything other than what we were going to eat. We walked around on the Strip, did a little gambling, ate some amazing food, saw a couple of shows and had a wonderful time. I spent one afternoon at the spa in our hotel getting a long overdue massage while my husband won a couple hundred dollars playing Craps in the casino at Caesar's Palace. During my afternoon of relaxation, I spent a lot of time thinking about what I can do to make my life a little stressful when I am home. Organization would definitely help, but it's not enough.
I need to spend more time taking care of myself. This is something I (and a lot of other parents of special needs children that I know) have a huge problem with. I spend a vast majority of my time intently focused on taking care of my children. Just juggling Aaron's schedule alone is a full time job and because I am so emotionally invested in it (for obvious reasons), it takes even more out of me than a regular job would. So I am the one who gets put on the back burner again and again. So often it isn't something that can be helped. Aaron needs a lot and I'm not going to say no so I can go get a massage, that would be ridiculous. But I am going to try to make more of an effort to identify someone who can come help me on at least a weekly basis. If I can get someone to come watch him that I trust and that I know will do a good job taking care of him, I think I could relax a little bit, get some work done away from home, go to the grocery store without getting a migraine headache and not feel like my muscles are contracted into one big knot at all times.
I am starting to look into Respite Care, which is a program offered to families of children with special needs who qualify for Medicaid. I have hesitated to use the service in the past because I just prefer to find babysitters on my own and I feel a little weird about a government program providing me with a babysitter. But the more I talk to people about it and look into it, the more comfortable I am with it. And I think getting away really gave me the opportunity to reflect on it and realize how much I really need it. I'm not exactly sure how many hours we are eligible for, but anything will be better than nothing! I am trying to look at it like I look at finding therapists. Our service coordinator will find people who are willing or able to help when we need them and we will interview them. Once we find someone we are comfortable with, they will come watch Aaron. I plan to stay at home the first several times the provider comes so I can feel comfortable that she is caring for him appropriately. Hopefully we will get to the point where I feel comfortable, trust the person we are using and can leave the house. If we get to this point, I really think it will benefit both me and Aaron.
Monday, October 10, 2011
So, as much as I want to keep this blog up, I might just have to take a break from this for the next three or four days too. I just need to get away, rest and relax. Away from everything. So we're going to Vegas! That makes sense, right?! I really am excited about the trip. Even though there will be lots of other people there, we will have a great time and it will be a wonderful escape from our "real lives".
As we sat at our neighborhood restaurant eating dinner tonight - or should I say, shoveling bites of food into my mouth in between nearly constant attempts at keeping Aaron quiet - I kept thinking about how nice it will be to eat a meal at a restaurant and actually be able to enjoy a conversation with my husband. And eat my food before it gets cold.
I'll let you know what this mysterious thing called "relaxation" feels like when I get back.
This photo of Las Vegas is courtesy of TripAdvisor
Sunday, October 9, 2011
I have been thinking about my last blog post and I don't think I really got my point across the way I wanted to. It's not that I said anything untrue, but there is so much more that I wanted to say that just wasn't coming out right that day.
I don't think it's realistic to expect ANY woman to be "SuperMom". But so many of us strive for that and all it does is cause extra stress.
I think this affects moms of children with special needs even more because we are perceived as "SuperMoms" just because of our situations. I don't mean to say I don't appreciate the recognition and validation from my friends and family members when they tell me I am doing a great job raising my children. I really do.
It's kind of a difficult thing to explain. When people say things like "you are doing an amazing job", "I know your life must be so difficult" and "I couldn't do what you do", there is a part of me that feels like I have to try even harder to live up to those perceptions.
I don't feel like a Supermom, most of the time I struggle to feel like a good mom. Believe me, when you try and try and try to get your child to listen to you and they refuse (for far longer than a typical child their age), it can be pretty detrimental to your self-esteem.
I often don't want to accept help with Aaron because I feel like I ought to be able to do it on my own. He's my son, I should be able to provide everything he needs. Regardless of whether or not that leaves me any time to do anything for myself or the rest of my family.
I know this Supermom thing is not unique to my situation. It happens to most of us in one way or another. It's all about "Keeping up with the Joneses", right? (I have always found humor in that saying since it's my maiden name) We think all of our friends are the perfect mothers, fathers, etc, but none of us really are. We all have flaws. I think I need to come up with a slogan that reminds us of that. Something like "Supermom Doesn't Live Here. She Moved to Never Never Land to Live with Santa Clause and the Tooth Fairy." Maybe I'll make myself a sign and hang it in my room.
Friday, October 7, 2011
I want to give both of my children everything they need to succeed in life. Aaron just needs a lot more than most kids and he probably always will. This can be exhausting but it's often hard to step back and let someone else help because I feel like it's my job to provide everything for him.
I have felt this way frequently over the past three years. When he was first diagnosed with Down syndrome, we learned that the Early Intervention program was available to provide therapy for him. That one wasn't too difficult because I am in the medical profession and I know the benefits that therapy can provide for him that I just can't.
Then we were told we were eligible to apply for Medicaid for Aaron. That one was difficult to accept. Using government assistance was never something that I had even considered. It's hard to swallow your pride and look at the benefits sometimes. But I finally did and what a relief it has been. Aaron has had lots of expensive medical procedures in his life and having Medicaid as a backup insurance has been a tremendous help.
Just accepting help watching my children has been hard as well. Now that Aaron is getting older, caring for him is not as simple as caring for any other child and it is hard to find someone I trust to watch him. My mother is coming to visit next week and I am so excited. Matt and I are going to be able to go away for a few days. It will be the first time I have spent more than a night away from Aaron and the break is desperately needed.
I have a feeling I am going to have to learn this lesson over and over for the rest of my life. I am always going to be trying to "do it all" and will constantly have to remind myself that it's okay if I can't. Really. It's okay.
Thursday, October 6, 2011
Hopefully tomorrow we won't have to spend quite so much time in the car. I'm sure Aaron will appreciate that. :-)
For anyone who is wondering, we still don't have any answers as to why Aaron has had an on again off again stomach bug for the past month. We have to go through some tests and hopefully that will give us some answers in the next week or two. I just hope whatever it is can be easily treated so he gets better! My poor boy has been sick enough and we are both definitely tired of this particular illness. Prayers are always appreciated.
Good night everyone - may we all have a slightly more relaxed tomorrow!
Wednesday, October 5, 2011
In an earlier blog post, I mentioned that the average life span of a person with Down Syndrome has increased from age 25 in 1983 to age 60 today. That is over double the lifespan in less than three decades. Does anyone else think that is just incredible? Can you think of any other condition that has shown that kind of improvement with no medication or vaccine? So what has happened in the past three decades to make this possible?
Personally, I think it's because doctors, researchers and even parents finally woke up and realized that people with DS are capable of learning and contributing to society. Rather than just being allowed to survive in institutions, people gave them to chance to live and grow into worthy members of their communities.
So, now that I'm off my soapbox, I wanted to explain why we spend so much time going to therapy. Aaron started therapy when he was six weeks old. Every state provides an Early Intervention program that helps parents of children who are developmentally delayed get connected with therapists. These therapists typically come to the family's home and provide therapy for the child to teach them the skills they need to develop. When he was six weeks old we started with physical therapy once a month. His therapist would come to the house and show me how I could help him by using infant massage, joint compressions and various other tricks to improve his gross motor skills. With her help, he learned to hold his head up, roll over, sit up, combat crawl, crawl on hands and knees, pull himself to stand, cruise along furniture and finally (about six months ago) walk. There are so many other skills he had to learn to achieve all of those goals that it still amazes me. Things that most kids do automatically and parents don't even notice are things that we had to put significant effort into learning. Each one takes time and kids can't do things like sit, crawl or walk without mastering all of these smaller steps first.
He now goes to physical therapy at a clinic because they have more equipment that they can use to work with him and it's good for him to get out of the house and interact with other kids as well. He is working on walking up and down stairs and reaching up to grab things without losing his balance. He really has made a lot of progress looking back on it and his therapists are a big part of that.
As for his other therapies, his feeding therapist is working with him on his sensory issues with his mouth and helping him learn how to feed himself with utensils. He has no problem feeding himself with his hands, but using spoons and forks is still pretty tricky - and messy. He has some serious aversions to certain sensations in his mouth and flat out refuses to let me get near him with a toothbrush. Although I am happy to report that he went for his first dentist's appointment this week and it wasn't a complete disaster!
His occupational therapist works with him on fine motor skills. We got a new OT just a few months ago and since then he has made amazing progress. He is finally able to make a pincer grasp with his fingers and is actually doing phenomenally well manipulating small objects. This new OT has a lot of experience with children with sensory processing disorder and has several family member with Down syndrome, so he is a great match for Aaron.
His speech therapist obviously works with him on speech, but it is a lot more than teaching him how to talk. She works on total communication, so she is teaching him to verbalize, sign and visually identify objects. He has made a lot of progress in this area recently as well. He is learning to identify some of his colors by signing, trying to say the words and pointing. It's so amazing to see that he understands when we talk about the color of something. If you think about it, color is sort of a difficult concept for a child because it is not an actual object, it is a description of an object. But he is getting it. And it's fantastic.
Tuesday, October 4, 2011
It is beyond frustrating. I'm a nurse and I'm at a complete loss trying to figure out what is happening to him. Normal stomach viruses don't do this. Once you get it, you don't usually get it again, and certainly not four more times.
We have a doctor's appointment on Thursday and I'm praying she can figure out what is going on. I am exhausted and I know he is feeling even worse than I am.
One thing that we have been dealing with since Aaron was born is his weakened immune system. This doesn't necessarily affect all people with Down syndrome, but he is one of "lucky" ones. He tends to get sick a lot more frequently than most kids his age and it is harder for him to fight off illnesses when he gets them. It is stressful and frustrating, but overall I feel very lucky. He has never been hospitalized and he has only been to the emergency room once. But we do spend a lot of time at the doctor's office. You know you spend too much time there when you walk in and the front desk girls say "Aaron! We haven't seen you in so long!" and you were there two weeks ago...
So, there you have it. I am sick of these germs!
Monday, October 3, 2011
For all of you out there who can't understand how my sweet little boy could possibly be difficult, let me explain. First, I have to pack a diaper bag which includes at least one complete meal and enough snacks to satisfy a very picky child on a gluten free diet regardless of how long we are going to be gone. It is inevitable that he will demand food the moment we get in the car and the entire time we are away from home. If I don't have the food he wants, he will scream and throw things until we return home, where he will promptly forget that he was hungry. This occurs nearly every time we go anywhere. Despite my best efforts to pack between 8 and 10 different types of foods for him to eat, none of them will be what he wants. And I can't rely on ordering food for him since not many places offer gluten free food - and I have never seen a gluten free kid's meal at a restaurant.
Second, he hates riding in the car, plane, or anywhere else where he is strapped down in a five point harness. He is incredibly strong (like freakishly strong) and is able to twist and wiggle his body into unimaginable positions to get out of whatever device you are attempting to use to restrain him. Most of the time I can get him buckled into his car seat IF I sing to him and he happens to want to hear the song that I am singing. If I choose the wrong song, he will yell, shake his head "no" and make it impossible to buckle his seat belt. So I continue singing different songs until I happen upon the one that he likes at that moment and finally get him buckled in. He then proceeds to yell or fuss for the entire car ride.
Finally, once we get to our destination - whether it be the grocery store, restaurant, etc - he typically screams for almost the entire duration of the outing. I bring toys he likes and they usually get thrown across the room. I bring food and attempt to feed him and it usually ends up on the floor or he just yells and refuses it altogether. I try singing to him and talking to him and sometimes that works, but it makes it pretty difficult to shop or eat if I spend the entire time trying to entertain him.
I think most of these behaviors are due to his sensory issues. He doesn't like sitting in the grocery cart, he doesn't like being confined in his car seat and he doesn't like unfamiliar places with unfamiliar sounds, sights and smells. He does like people watching, but that only interests him for so long. He wants to be free to run around, grab everything within reach and explore. The problem with this is that he has no sense of safety awareness and no concept that he needs to stay with me rather than running off wherever he wants to go. And he is fast. Most children at least have some sense that certain situations aren't safe and they want to stay close to their parents when they are out in public. Aaron does not.
Before I had him, if I had seen a child behave this way or heard a parent say they could not get their toddler to do something, I would have thought (and did think on a few occasions) that the parent was doing something wrong. There is no reason a toddler should have more control than the parent. But now I know better.
Believe me, it's not for lack of trying to correct the behavior that Aaron acts this way. Redirecting, time outs, stern voices, I've tried it all. He knows right from wrong in many cases, but he just doesn't care most of the time. I don't mean to make him sound like a monster. I don't think he has control over his behavior in many situations and we are certainly working on that. And I can see glimpses that things are getting better. Maybe we'll be able to enjoy a meal at a restaurant as a family some day. Until then, I think I need more patience - and naps.
Sunday, October 2, 2011
So I just want to share a few facts about Down Syndrome that will hopefully help people realize that it is not as devastating a diagnosis as many believe.
- Life expectancy for people with DS has improved dramatically over the past few decades. Today, the average life expectancy is 60 years old - compared to 25 years old in 1983. It is widely believed among experts that people with DS born today will live as long as their typical peers.
- Although Down Syndrome causes developmental and cognitive delays, a majority of people fall into the mild to moderate delay category.
- The chances of giving birth to a child with Down Syndrome increase with maternal age (specifically over the age of 35). However, 80% of children with Down Syndrome are born to mothers UNDER the age of 35 (I turned 28 a week before Aaron was born).
- Down Syndrome is the most common chromosomal abnormality, occurring in 1 out of every 691 live births.
- Down syndrome is not a disease, it is a genetic disorder (although it is usually NOT inherited). The medical term for DS is Trisomy 21 - which indicates there are 3 copies of the 21st chromosome instead of the typical 2 copies.
- Incredible advances in research have been made in recent years. Many researchers and scientists now believe that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the near future. Clinical trials have recently started for a medication that hopes to improve cognitive function in people with DS.
Saturday, October 1, 2011
So I'll be posting something new every day. Facts about Down Syndrome, stories about how it has affected our family and of course updates about Aaron. I hope you'll join me on this journey and maybe learn something in the process.
One of my favorite phrases used in the DS community is: "We're More Alike Than Different". It is so much easier to notice our differences than it is to think about our similarities, but sometimes it's important to do just that. Rather than focusing on how different people with DS are, try taking a few minutes to think about how much we have in common.
People with Down Syndrome can learn, love (often better than the rest of us), play, work, sing, dance, cry and laugh. They might learn a little more slowly and differently than most, but that doesn't mean they can't learn. They - and anyone else with a disability - deserve to be accepted as the people they are, rather than stereotyped by an extra chromosome or whatever their disability happens to be.
Friday, September 30, 2011
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.
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!
Monday, August 22, 2011
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?!
Saturday, August 20, 2011
However, the most significant event of the day had nothing to do with my birthday.
Wednesday, August 10, 2011
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. :-)
Friday, August 5, 2011
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!
Friday, July 15, 2011
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!
Monday, July 11, 2011
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's hard to believe it has been a year since we moved to Phoenix. We do miss our friends and family here and have had a great time visiting. But we are happily settled in Arizona now. Both of the kids are happy and well adjusted and Matt and I are too.
It is amazing how fast our trip has flown by already. I have so many friends here that I wanted to see and just wasn't able to. If you are one of them, hopefully we can work it out next time around. And you can always find me here, on Facebook or through email!