Selective Hearing

Aaron comprehends a lot more than even I realize most of the time. The other day he saw a sticker with the number one on it and he brought it to me and held up one finger! He knew it was a number one! Incredible!

Then we have days like today when he wants to watch Blue's Clues for the 10th time and I tell him "no". But he just looks at me like he doesn't understand me and gets closer to my face and asks over and over again. He sure knows how to play up the "I don't understand card". Stinker.

But don't worry I'm not giving in. I've got his number. 😉

We Have a Talker!

When Aaron was born and subsequently diagnosed with Down syndrome, several people told me that they believed he would grow up to be a great speaker. That he would have an impact on this world. That he would do great things with his life.

Those are all great things to hear when your child has just been diagnosed with a permanent, developmental disability that will alter the course of your life.

I don't know if those things were said to me to make me feel better or because the people who said them truly had a strong feeling that they were right. Whatever the reason though, they have stuck with me over the past four years.

Specifically the one about being a great speaker. It had to do with his name. Aaron is a biblical name. Aaron was Moses' brother who spoke for him when Moses could not.

However, as the years have passed and the words haven't come, I have wondered if there would ever be any truth to those words that were spoken to me back to then.

We have been getting speech therapy since Aaron was just a few months old and all along his therapists have told me that he is doing great and they are so proud of him and he is improving so much. And while I appreciated the praise and encouragement, I couldn't help but think:

But he still can't talk!

UNTIL TODAY!!

TODAY Aaron said "Thank You" to me. He didn't use sign language and I didn't prompt him. He was eating breakfast and I told him he was doing a good job using his fork and he looked at me and said "thank you", then went back to watching Blues Clues.

It actually took a minute for me to register that he had actually spoken to me. Then I almost burst with delight.

To be clear, these weren't Aaron's first words ever. He has been saying "Daddy", "Bubba", "Ball", "Pop", "Papa" and occasionally "Mama" or "Mom" for a while now. But they are just single words.

"Thank you" is a phrase.
It has distinct sounds that differ from each other.
And he didn't sign it at the same time.

All of these are huge breakthroughs for us that for me, pretty much equal the excitement I felt the first time he walked independently.

I don't know if Aaron will grow up to be a public speaker or change society in any dramatic way. But he has already impacted many people's lives and he is going to make a difference. Some how, some way, to someone. Even if it's just me. He already has.

AND NOW HE CAN TALK!!!

I'm Not Special and Neither is My Kid

First, I want to say this post may be a bit controversial and it may even offend some people. If so, I'm sorry in advance. My intention is not to offend anyone, but instead to give you a glimpse into my life and the lives of many other parents of children with special needs.

Just a few days ago, I read a Facebook post from one of my favorite DS parent advocates, Noah's Dad, asking parents to help him with a list of Top Things NOT to Say to the Parent of a Child With Down Syndrome. While I have heard a lot of sentiments that were listed (thankfully, not all of them because some of them were really cruel), one that is repeated very frequently to many of us is this:

"I believe God only gives special children to special people."

Now, if you don't have a child with special needs, I know what you are thinking: "what the heck is wrong with that?!?" Right? It seems nice and complimentary and typically comes from a good place in your heart.

Well, let me tell you why it's not. Even if you mean it in a nice way (and I believe most people do), what it says to me is this:

"I'm glad it's you and not me"

I'm not special. There's nothing different about me or my family. I have two little boys that I do my best to take care of every day. My son who has Down Syndrome has also been diagnosed with Celiac Disease, multiple food allergies, Sensory Processing Disorder, PDD-NOS (which is on the autism spectrum), Asthma, Sleep Apnea, chronic ear infections and several other smaller issues that I can't even think of right now. We go to therapy four times a week, see 10 different doctors on a regular basis and have to worry about things like how to provide him with the best and most inclusive education while also providing the supports he needs. I haven't even had to go to an IEP meeting yet because he hasn't started school, but let me tell you, just the thought of it is overwhelming.

If this is what it means to be "special", I don't want it.

That's not to say I don't want my son. I love him, I would and will do anything and everything for him that he needs. But you would too if he was your child. That's what we do as parents. I'm not any more or less special than you are because my son faces these challenges.

I wish that I could go out somewhere and allow my child to walk next to me. He is almost four years old. But I can't. He will run away from me. He has no safety awareness. He can't communicate with other people. He is cute and friendly and blows people kisses and they all think it's adorable, but they also wonder why he isn't talking back when they speak to him. This isn't what I want for him. I wish I could take him to the playground and talk to my friends while he plays with the other children. But I can't. He will get hurt or run into the street. I wish I could send him to school without agonizing over what environment is best for him and wondering how in the world to trust these strangers that are supposed to be teaching him. He can't talk to me to tell me what is happening at school.

I don't say all of these things to make you feel sorry for me. While raising a child with special needs is challenging, it doesn't make me special. And I truly don't believe I do anything different than any other parent would do.

People can say really cruel things and by no means is this the worst that I or most parents who have children with special needs have heard, but it doesn't say what you think it does to us. It makes it sound like you pity us. And we don't want pity. We want our kids to have the opportunities and acceptance that yours do. We want friends and family to accept us and our kids and give us support when we need it. Although my outlook on life changed when Aaron was born, I didn't suddenly become someone that was more "special" than any other parent.

If my life or my son's life inspires you or makes you appreciate your own kids more, that's great. Tell me that. If you think I'm stronger than you are, you are probably wrong. I get by, I do what I can for my kids and I try to handle it all. Most of the time I feel like a nervous wreck.

I certainly don't feel special.

End of 1st Grade and Georgia Bound!

The end of the school year was crazy as always so now it's been another month since I updated the blog. Oh well! Since the last blog post, Jacob finished 1st grade and we made it safely to Georgia to begin our summer tour.

Jacob finished his school year on May 25th with a very long and difficult day (insert sarcasm here) that consisted of going to the park for two hours and getting out of school at 10:50. He did tell me a few days before school was out that he was sad that school was ending because he loves it. At least I know he didn't mean it all those times he didn't want to go because it was "so boring". :-)

We really did have a good school year. He excelled in all of his assessment areas and we both loved his teacher. We only hope 2nd grade is even better!

After school got out for the summer we had a fun weekend at the Phoenix ComicCon being nerdy. Matt met Lou Ferrigno (the Hulk) and William Shatner, Jacob met Jeremy Bulloch (Boba Fett), and we all met Lavar Burton - who was pleased that we were Reading Rainbow fans! :-)  We all had a great time looking at all of the "crazy" people dressed up in costumes and Jacob even won a Ghostbusters t-shirt in a raffle from the Arizona Ghostbusters! It was a lot of fun.

On Wednesday afternoon, the boys and I began our seven week adventure in Georgia. We had a flight on Southwest that I was VERY nervous about because Aaron screamed for the entire 4 hour flight last year.

I did everything I could to prepare. We had plenty of snacks, drinks, his stuffed puppy dog and the iPad loaded with an entire season of Blue's Clues. Overall, he did great. He yelled (happily) during Blue's Clues several times (if you have ever seen him watch an episode of that show you will know this is not unusual) but I much prefer that to the screaming. He didn't start crying until 20 or 30 minutes before the plane landed and by then he was just sick of being strapped down so there wasn't much I could do to calm him down. But I will take that flight over the last few we have taken any day. Hopefully he is getting more tolerant now that he is older and having the distractions that we did helped. However, I still don't recommend traveling with two small children and all of their stuff alone - it is very difficult. But it will be worth it to be able to visit our family and friends in Georgia for the next 7 weeks!

We are thoroughly enjoying a break from the 110 degree + temperatures that we were experiencing in Phoenix. I'll take the humidity over that insane heat any day.

So, if you're in Georgia and you want to see us this summer, let me know!

Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)

Not the Perfect Mom

Have you ever felt like you just can't catch a break? Like every little thing goes wrong all day long and completely ruins your mood and your attitude? Today has been one of those days for me and it's not even lunch time. Unfortunately, I feel like I have had a lot of those days lately and it just plain sucks.

I want to enjoy my family and my children. I want to be the mom that does fun activities with her kids and keeps a (relatively) clean house and has a good dinner on the table for her family every night. Instead, I feel like the mom who is constantly yelling at her kids and trying to get away from them, almost never provides any fun activities that we can all do together and more often than not feeds her kids lunch meat and cut up fruits and vegetables for dinner while I sit and watch them eat. And don't even get me started on what a wreck the house is all the time. I am exhausted at the end of the day (who am I kidding, I'm exhausted by the middle of the day) and I just can't seem to be the person I want to be.

Today, we got up early to take Daddy to the airport because he had to go to Las Vegas for the week for work. I tried to think of things to do with the kids today to keep them busy so we wouldn't be driving each other crazy. Going anywhere is pretty much out of the question because Aaron doesn't like being confined in his stroller and if he's not in his stroller when we are in public, he will run off and make it impossible to do anything. If he is in his stroller, he screams and cries. So, I am left to think of activities we can do at home. I got him a new water table last week and he hasn't played with it yet, so I thought that would be fun and would probably entertain them for an hour or two.

When we got home from the airport, I filled the table up with water and let Aaron play. The first thing he did was try to climb onto the table like he was getting into the bathtub. It's not a pool, so that didn't work, but it didn't prevent him from trying it about 5 dozen times. When he wasn't trying to get into the table, he found the drain plug and promptly pulled it so all the water drained out. After refilling the table (a couple of times), both boys were playing and getting completely soaked (which is fine - that's kind of the point). But of course every few minutes someone would cry or complain about something. Then a bee showed up and ruined the whole activity since Jacob refused to go anywhere near the table after that. (The bee did not sting anyone, but Jacob was stung by a yellow jacket last year and has been terrified of all bees since then) So that was the end of that activity! It lasted all of about 30 minutes.

So we came inside and watched some Blue's Clues and Phineas and Ferb on Netflix. But the dog also decided to pee on the floor next to me and Aaron stuck his hands in it before I noticed it. Once I cleaned that up and washed Aaron's hands, I noticed he had made a mess with his snack all over the walls, so I had to get out the Mr. Clean Magic Eraser to clean that up and while I was trying to do that, Aaron found his water bottle, came up behind me and started dumping his water on my back. Of course this was hilarious (to him). So now, the dog is outside, the boys are in their rooms and I am trying to convince myself that I can make it through the rest of this day. It's not even noon yet.

So I need some help here. I have all sorts of friends who post on Facebook and on their blogs about how great their kids are and the fun things they do together and how they can't wait for summer vacation so they can spend more time together. How do you do it? (by the way, if that's you, I'm not trying to be mean, I really want to know!) How do you enjoy all that time together without losing your mind? How do you do all of these fun things together and cook dinner and have that perfect family? I have been trying but I can't seem to figure it out, so I need some tips. Are you really as perfect and pulled together as you make it look? People tell me all the time that they don't know how I do what I do and sometimes people even tell me I'm a great mom. I feel like I am trying but I am far from a great mom or at least far from the mom that I want to be.

I'm not writing this because I want a pity party (although I realize that is pretty much what it sounds like) and I am not overwhelmed or feeling depressed. I'm just frustrated with the way things are and I want to make it better but I don't know how. So really, if you have any suggestions or tips on how you manage to get things done and actually enjoy your children, I would love to hear them.

FREEDOM!

I like talking about Aaron and his various diagnoses. Not because I like to think about all of his challenges, but because it gives me an opportunity to educate other people about all of these things that they may have never heard of. I have learned so much and done so much research in the past three and a half years and I really enjoy sharing that knowledge with other people. After all, it's the best way to spread awareness, right?

At this point, Aaron has so many diagnoses that it's hard to keep track of them all. I have several notebooks full of medical records and have to keep a file on the computer just so I can keep all of his doctors and therapists straight. At this point (keep in mind, he's only three), he has been diagnosed with Down Syndrome, Celiac Disease, Asthma, Sleep Apnea, a soy allergy, Sensory Processing Disorder, Reflux, Chronic Ear Infections (including three sets of tubes and an adenoid removal) and mild hearing loss. He also sees a cardiologist on a regular basis because he had a hole in his heart (VSD) when he was born. It closed on it's own within the first year of his life but we have continued to see cardiologists on at least a yearly basis for other more minor issues.

However, today we went to the cardiologist for our yearly visit and he said he has no more concerns about Aaron's heart!! Yay!!! He does want us to come back in 3-5 years for one more echocardiogram just to be sure nothing has changed but other than that we are cleared from Cardio!! This might not seem like a big deal to some, but Aaron has a Pediatrician, a Developmental Pediatrician (at the Down Syndrome Clinic in Atlanta), a Pulmonologist, an ENT, an Allergist, a GI doctor, an Orthopedist, an Ophthalmologist, a Pediatric Dentist and a Cardiologist that he sees at least once a year - most of them he sees more frequently than that. And that's not even counting the four therapists he sees every single week! So crossing even one of these specialists off the list is just so wonderful! Obviously I will (and do) take him to whatever appointments he needs but after all we have been through over the past three and a half years, it is amazing to hear a doctor tell me that he is cleared instead of telling me that he has a new, lifelong diagnosis.

Thank you God, for giving us a break today. It has felt like we have had nothing but a string of bad luck lately (and we are still currently trying to figure out his current medical problem, but more on that another time) but today I felt like we got a little relief. And it is oh so sweet. So today we rejoice in being one doctor down. Yippee!