Oh, how far he's come!

I finally got the pictures off my camera from our visit to Grandad and Nana's house back in August.  I was more than happy about how they turned out, as I really captured so many of the things that mean so much for me to see.  It's amazing to me exactly how far Ayden really has come even just looking back at these pictures.  From actually playing, to running around in the grass, to picking up and holding a tennis ball, petting a dog, and even standing patiently while watching the car cruise with the family.  You'll notice how none of these pictures include tears or sadness, and it's important (at least for me) to note those pictures weren't left out or not taken - this was Ayden pure and simple.  Happy.  Excited.  Enjoying summer.

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A Boy and his Fish

As I briefly mentioned here, we got Ayden a fish tank for his birthday this year.  Ayden ADORES his fish.  They get a good morning immediately when we go downstairs and he will sit and watch them and wave at them multiple times during the day.  He blows them kisses at night even.  I'm fairly certain those fish loved him just as much...one of them let him touch it and the other swam to the side of the tank when Ayden approached.  It was a weird and special relationship, I've never seen fish act like they did.

Through a series of crazy events, 2 of our 3 fish died Saturday.  We waited until the kids were in bed to clean them from the tank, Ayden didn't seem to notice when he went to bed they were both laying on the bottom.

The next morning, Ayden came downstairs to a mostly empty fish tank.  (The catfish was there, just laying on the bottom of the tank like always).  I was hoping he wouldn't notice too much, but I quickly realized that was not the case.  I saw him run to the tank and stop mid-wave.  Then look around the tank, running to both sides.  He then pointed at the tank, and looked at me, then pointed again.  I think my heart broke a little with the look on his face.  It was very clear he knew his fish were missing and was not happy about it.  I quickly distracted him with food and then followed with the iPad hoping he would forget.  However, the scenario repeated itself multiple times throughout the morning.  Mr Awesome and I decided we needed to get some more fish that day.  I think we were both surprised at just how sad Ayden seemed that his fish were missing.

We did get more fish (the non-aggressive type this time), and while Ayden was happy he was still looking around for his other fish.  We explained that we sent Bully Fish to the hospital (I know we said some other things, but can't remember exactly), I'm not sure he understood really but he seemed to accept the new fish and by this morning has stopped looking for his other fish and waving like normal to the new fish.

While I'm not surprised Ayden noticed his fish missing, I was taken back at how sad he actually seemed as well as how he grasped that his other fish weren't coming back.  It's extremely difficult to teach a child about death anyhow, but when he can't talk to me and ask questions I just wonder what exactly he is thinking when he obviously realizes his fish are gone.  I think we handled it the best we could, and yet I still wonder what is inside his head.  For now though, I am content that he is happy with his new fish. 

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About a Video...

I had this video shared with me by a friend...and wanted to share it here as well.  The video creator goes over some numbers, that I want to add Fragile X to as well.

Leukemia affects 1 in 1200.  Funding: $227 Million
Muscular Dystrophy affects 1 in 100,000.  Funding:  $162 Million
Pediatric Aids affects 1 in 300.  Funding:  $394 Million
Juvenile Diabetes affects 1 in 500.  Funding:  $156 Million
Autism affects 1 in 100.  Funding:  $79 Million.

For 2010...the National Institute of Health (NIH) had a budget of $35.6 Billion.
$218 Million of that went towards Autism research, $29 Million to Fragile X research.

**NIH numbers taken from here, Prevalence numbers taken from here.

Fragile X is the most common known cause of autism or autistic like behaviors. The Fragile X gene is the cause for autism in 2%-6% of all children diagnosed.

I certainly don't believe Ayden can be "fixed" and there probably will never be a "cure" for Fragile X or Autism  - but the research out there can help make life better for these kids, easier, more normal.  It's this funding that can bring that much needed research and development about, and for that there can never be enough.  I hope you take a few minutes to watch this video, it's well worth it.

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iPad Update, 1 Month Later

I have been meaning to do an update on our iPad for a while now.  As I was going to title this post, I did a quick check to see how long it's been and surprisingly it was exactly one month ago today that I posted our first update!

So, here we are one month in. Ayden's time is closely monitored on the iPad because he literally could playALL DAY without stopping.  We usually do about an hour a day split into two sessions (morning and afternoon).  He is required to play with other toys in order to get his time, so in a way it's used as a reward.   It's especially interesting to me that it calms him as much as it does.  Normally speaking, video games shouldn't do that.  Our FXS doctor actually recommended not allowing any tv or video games an hour before bed or nap when discussing sleep issues.  It is quite the opposite with Ayden and we find he will fall asleep much better or be more calm after playing (if he tolerates his time being up).  With his anxiety issues, any kind of activity that he can do himself to calm down is fantastic.  We were given a bean bag chair by Ayden's uncle, and I also try to keep one of his iPad sessions in that chair as well.  Double sensory calming?  Yes, please!

I've said before Ayden says about 5 words, but none of them consistent and certainly not spontaneous.  He has quite officially begun saying his first consistent word and using it properly without prompting.  It's usually the first word out of his mouth in the morning even.... "iPad!"  I'm sure he'll love hearing this story when he is older too!

Onto the apps....  I'm going to start reviewing some of these Ayden plays a lot soon, first I want to figure out how to screenshot them a bit. I should know how..but haven't sat down and figured it out yet.  We'll get there though!

We have a decent amount of apps for Ayden to play with right now.  First among those is Angry Birds.  It's the first app he went to, the first app he asked for...and definitely the first app he plays when he sits down.   We let him saturate on Angry Birds right away at first and didn't force him to do anything else.  I've learned from experience that letting him get to the point of realizing he's "done" with something is much easier than forcing him.  Our entire day will be ruined if I force him, and that just isn't good for anyone.  It took a few weeks, but he slowly started moving into other apps.  I was really focusing on letters, numbers, colors, and shapes when looking for apps to add - and let's just say there are a TON.   I was fairly certain Ayden knew these things - but output is so difficult for him without proper motivation.  I am ecstatic to be able to say now that he definitely knows all his letters (upper and lowercase), at least the numbers 1-5 (I'm actually thinking it is higher, but he doesn't play with number games much), all his basic colors, all his basic shapes, can match similar objects, play memory games, as well as identify most farm and zoo animals.  Oh, and he can put together 20 piece puzzles.  He's also starting to understand different emotions.  This seems like an odd thing to know, but one of the apps he has shows you a face and says if it's happy, sad, mad etc...  There is a lot more I've noticed, but these are the big ones for us.  Basic skills that most 4 year olds have, but I wasn't sure we were there with Ayden.  Being with him all the time, I suspected he knew all this, but to SEE it.  To know without a doubt he understands, he comprehends...it's amazing and wonderful and just leaves me speechless. 

When I was explaining about the contest that started all of this for us...I said this:

"To be certain, it [an iPad] is not something Ayden needs or we would have figured out a way to swing it.  However, I cannot deny how much this tool could help him."
Today, I am officially eating my words.  I could never have dreamed that this device could bring so much joy to Ayden as it has.  I couldn't have imagined how much it would positively affect our lives.  I certainly wouldn't have thought after just a mere month that he would be giving us the output he is and continuing to build on that knowledge and learn in a way that we can watch and see progress and track.  Most children have their voice and communicate their knowledge in that fashion.  For Ayden, that iPad is his voice right now and what a beautiful voice it is. I love the fact I can get a glimpse into the head of my 4 year old in a way he enjoys.  I couldn't have ever asked for a better gift for him or for us.

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4 Year Well-Baby Visit

We finally had Ayden's 4-Year well-baby (child?) visit this last week.  To say it was traumatic (for me) would probably be quite an understatement.  We had to reschedule this visit, which is why it is so late, and ended up having our appointment with the "new" doctor in our practice instead of our normal pediatrician.  We used to have a nurse practitioner at our office as well as our normal pediatrician, but she left back in January and since then it has been difficult to get into the doctor.  It's nice to have the option of seeing someone else if need be, but we will not be seeing this particular doctor EVER AGAIN.

Obviously, Ayden has a decent amount of developmental delays.  Our visit to the FX Clinic back in May included many evaluations and our doctor's office has all those on file.  I know exactly where he is behind, what month he is testing in for all areas of development and essentially more about Fragile X then most people around.  I live it, it's expected.  I certainly don't expect our normal pediatrician to know as much as I do about it, but expect that she will take suggestions I have into consideration and research them if need be.

So, the first thing this new doctor has me do is fill out a basic "What is your child doing?" evaluation.  I've filled out a ton of these, and breeze through it.  I know he's behind, I don't need a test to show me.  I'm a bit annoyed I have to fill it out given the records we have on file, but whatever.

Ayden is doing pretty well at this point as our appointment was during his normal nap time.  He has sat through me filling out this evaluation, made it back to the actual room with the nurse, and had his weight/height taken without too many issues.  Overall, very good for him.  His anxiety level at this point was very low.  I went over the things I wanted to cover with the doctor including finally getting our referral to the speech and occupational therapy programs at Sparrow Pediatric Rehab.  They happen to be the ONLY speech therapy in our area that takes insurance and have a 6 month waiting list which requires a doctor referral.  I also wanted to discuss the possibility of Minocycline and ask our doctor to do some research for me, of course providing her with some articles explaining how it can benefit FX children.  We haven't decided we for sure want to try it, but I wanted our doctor's opinion after she looked into it.

Nurse leaves, new doctor comes in.  He immediately approached Ayden without saying anything to me and touched his face asking what the two marks on it were.  (They were mosquito bites).  My ultra low anxiety Ayden now hits the roof and begins flailing and screaming.  Issac, who hates his brother like that of course tries to help by handing him anything he thinks Ayden would like making it much worse.  Meanwhile, new doctor is talking over the top of screaming - STILL has not introduced himself.  Uh....really?  My annoyance level is now also pretty high. 

I do get Ayden calmed down, fairly quickly for having had a stranger touch him without warning.  Heck, I can barely touch his face with out telling him first and even then he barely tolerates it.  The doctor now says to me...and I want to quote this.... "So, he's autistic or something?".  Jaw. drop.  I expect that from strangers.  I expect that ignorant people.  I DO NOT expect or tolerate that from a pediatrician who HAS MY CHILD'S CHART IN FRONT OF HIM.  I very calmly explain that no, he has Fragile X Syndrome with a dual diagnosis of PDD-NOS and all his paperwork should be in his file.  His reply "So, he's autistic.  Ok." then immediately launches into a lecture about how I need to get SSI for Ayden and other supplemental insurance because I'm doing him a disservice by not having those things available to him.  In the midst of this, he explains how Ayden's Early On teachers are also terrible and not doing anything they should - also tells me we need a caseworker.  Did I mention he still hasn't introduced himself or even asked my name?  I am BEYOND frustrated at this point.  For anyone to tell me I am doing my child a disservice by not taking government money that we DO NOT NEED is beyond arrogant.  To then tell me his wonderful teachers are terrible is just another thing entirely. 

So, frustrated, annoyed, and totally flustered now.  Doctor beings going over the developmental evaluation I filled out.  Tells me Ayden is severely delayed.  (No kidding?  Did you even read the Fragile X stuff in his file, it's pretty detailed).  He tells me Ayden's percentiles which the nurse already went over and then starts checking Ayden out.  Of course this part is terrible, but I instruct him how to do it the best way and thankfully he does listen.  It's never pleasant, but necessary.  I decide while this is happening to totally skip the minocycline talk - I'll have it with our actual doctor later, it's not imperative anyhow.  I do; however, need the referral, which seems like it shouldn't be a problem.  Doctor gets ready to leave and I remind him of the referrals for speech and OT.  In yet another "really, you are a doctor" moment - he says "Why would you need that?"  I am SO DONE by this point, so I'm sure I was rude.  I explained SPR needed the referral sent directly from the office and wouldn't accept it any other way.  He was insistent that the FX Clinic we went to should have done this for us to which I very firmly told him he needed to write it out for us.  He still only wrote up a prescription, handed it to me and left as he's telling me the nurse will be in for vaccinations in a few minutes.  You know, the first time he mentions it at all.  I had no clue, so didn't have time to even ask which ones he was getting.  In retrospec, I should have checked...but I was so flustered already.

Vaccinations are always terrible for us, and Ayden needed a total of 4.  It took 3 of us to hold him and 1 nurse to administer the shots.  It's the first time I've ever cried during shots...it was just terrible.  I know it's needed, but it was difficult this time.  Even with all of us holding him he still moved and got a nice scratch from one of the needles.  Just a very sad end to a terrible doctor visit.  Now...back to the vaccine part - I  rarely refuse vaccination, but I had turned down one that I decided not to have him get.  I can't remember which one it is, but there is one that now covers a new strain from when Ayden has his, so he essentially would be getting an "extra" dose.  I wasn't okay with that, so I turned it down after checking into it at Ayden's last visit.  We put it on the chart, so I guess it didn't cross my mind to double check.  The risk is small, it's not required, and it was an extra dose I just didn't feel comfortable about.  Somewhere in the midst of the chaos that was his appointment, this doctor decided to give Ayden this vaccine anyhow.  Without telling me. Not a happy mommy.  I don't know how it slipped by the nurses, but the damage is done now.  I feel like he probably told them I ok'd it, because our nurses are amazing and have never made a mistake and ALWAYS respected my wishes.

I did have a chat with the nurse after the vaccinations were done.  We were lucky enough to get my favorite nurse, and I politely asked if this doctor would be a permanent addition to staff.  Luckily, he is temporary and only works a few days per week.  We now have it listed on our chart that we don't ever see him.  I of course checked to be sure our normal pediatrician was not retiring with new baby on the way, if so we definitely would look into another office.  Thankfully it's not in the works...and more doctors in our office are.

Now, I'm sure reading this very negative post you realize it's a fairly uncommon thing for me.  I do, in fact, try to keep this blog very upbeat.  This visit was just so off the wall, and not normal.  My reason for sharing is simply to let others know these type of visits DO happen.  And they are most definitely not normal or okay.  No one should ever leave a well baby visit  feeling like this, so if you are then please do yourself and your child a favor and find a new doctor.  I think so many times with insurance we can forget that we are customers and should be treated with respect.  Of course doctors often have to say thing we don't want to hear, but the manner in which they do it and the way that treat us and our children is very important.  I know, personally, we are very thankful we have an amazing pediatrician.  Given the fact the whole office is so wonderful, I doubt it will be long before this doctor ceases to be a part of the office.

Until next time...

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