Tuesday, June 11, 2013


I apologize in advance for a couple things. First my computer is on the fritz, so I'm posting from my phone! Second I apologize if this post is all over the place! I feel like I'm being pulled in a bunch of different directions when it comes to inclusion, and that may also come out in this post! 

Inclusion can be a heated topic. This post is not meant to be like that, just my feelings as a mom that has two children on complete opposite ends of the disability spectrum!
I look at my beautiful girl, and I don't even feel like I can call her disabled! No she doesn't talk, but she signs and she communicates. Besides that she has no disability that I feel is all that different from many children! I remember a friend did a post on inclusion and a mom had the nerve to say that she doesn't want her perfect children to have time taken away from them if a child with special needs is in their class! All I can say is this mom is not even paying attention to her own child's school! Chances are if you went into your child's class, there is at least one, probably more children that get pulled out of class and goes to resource for special help! Some children struggle with math, some with spelling, it doesn't mean that your child is getting any less attention than they should be getting!

We all struggle in one or more areas of life, so are we all disabled in some way? Right now Arina is in preschool, when she starts school I want her to go into a classroom with "typical" peers. I don't feel like there's any reason she should be separated! If down the road she isn't learning the way she should, than I would definitely consider putting her in a special day class, a class where she spends the entire day with a special Ed teacher. As a matter of fact, Tanner was pulled out of his class a few months ago and put in a special day class. His learning had slipped quite a bit, and he was getting farther and farther behind his peers. He is thriving in the special day class, and I know that's the best place for him right now! 

Now Jax, oh sweet Jax! His schooling has been a nightmare! Obviously he was referred to the special needs school, where severely delayed children go. I wasn't impressed with the school itself. I know it's a budget issue, but that doesn't make it right. It's very dark and old and outdated. Nothing at the school screams "this would greatly benefit Jax!" And even though Jax would have a home nurse go with him to school, I wasn't impressed with the staff nurses abilities. They didn't know how to suction a trach or even what the suction catheters were called. I just didn't feel it was worth Jax health to go to a school that didn't have great therapy equipment like he needs. We decided to do home/hospital until I figured out what I wanted for him. Up until this time we STILL had yet to get him an IEP done! So a teacher comes out to meet him, and then never comes back. I hear nothing until I call, and I'm finally told the teacher couldn't do it anymore! I actually called and talked to Tanners teacher, a special ed teacher. She said their school does mild/moderate, like tanner, and severe. She was a tad worried about Jax medical needs, although I reassured her that he would have his own personal nurse with him the entire time. But without an IEP the boys school can't decide if Jax would be ok there. The boys would love if Jax could go to their school, and I think it would benefit the other kids as well, interacting with a child like Jax. Of course  if he went to the boys school it would be harder to keep little hands off him! Again it puts me in a great dilemma about what's best for Jax! I'm all about including him in whatever we can. So I feel like we should at least give it a try! I'm going to call tomorrow and demand a new case worker and an IEP to be scheduled for him immediately! 

So you can see why this is so wishy washy with me! This whole inclusion and school thing can be such a battle! I'm just glad that Arina and Tanners process has been smooth and direct, and we'll work on getting Jax there too, wherever his placement ends up! And it may change a few times until we find the right fit!

Thursday, June 6, 2013

Solving the access problem!

We made a huge step forward in Jax cares and well being last week!

Jax is finally getting a port!!!

A port is a central line, surgically implanted totally underneath the skin. Its basically the same thing as a PICC line, but you can't see it if its not being accessed! I've been bugging doctors for years about putting a port in Jax. Every time I was brushed off. After a stint in the ER with Jax last week, his potassium came back dangerously low. The IV that they had finally managed to get after 3 pokes had already blown. We were stuck between a rock and a hard place. A bag of IV potassium ready, and no place to actually get it into Jax body! The ER team was in a bit of a panic! 
That was the final straw for me! I do not want to get in a place where Jax was very sick, and they were unable to gain access! So at Jax surgery follow up, I asked his surgeon about a port. Have I every mentioned I love Jax surgeon?? He knows that moms know best, he told a nurse in post op to make sure she listens to me, because I'll spot a problem much faster than them. But he agreed that we were playing with fire not having an access point in Jax. Of course he goes into a story of another chronic child that they couldn't get an IV in and surgery had to come down and try and find central access. He was ready right then to schedule an appointment to have one placed. I told him that ENT was wanting to do some airway surgery, so as soon as I hear from ENT, they are going to coordinate the two things together. This is a huge weight off my shoulders. HUGE! 

If you've never seen a port, here is a picture. Not all ports are as easily seen as this one. 

Jax can't go in his chest or arms, but his surgeon is confident he can find a place to put it. It may even go in his abdomen, if we can find someplace, his abdomen is a bit crowded!
One quick poke into the round part, and your automatically into central access! You tape it down and it looks just like a PICC line from the outside!

This placement can't come fast enough, after today again poking and poking and getting nothing at a lab draw!
Whatever can make Jax life easier, we'll gladly take it!

Monday, June 3, 2013

The abuse of the handicap pass!

I'm sure you've all heard the stories in the media lately. First it was the story of rich Manhattan mommies hiring disabled people as tour guides at Disney World to get the on the rides faster with their handicap pass.

Then just the other day Rosen did a report on the Today show where they went undercover and hired supposed disabled people to get them on the rides faster at Disneyland.

Every time I think of this it has me fuming! Some people said hey, disabled people can make good money doing this! For me its, hey, lets teach disabled people that its ok to lie and cheat! Ya, thats a great idea!
The other problem with that, is look at the two people hired by Rosen to use their pass....both of them were themselves lying about being disabled! One guy wouldn't even say his disability, the other said it was her back and knees. So her back and knees were so bad that she can't stand in line, but she can walk the entire park, and go on jerky rides! Sorry as I roll my eyes to that one!

As frequent visitors to Disneyland, we've noticed the abuse grow to a disgusting level! Right now the big excuse is Autism. Because Disney is not allowed to make your prove your disability, autism is a great excuse because you can't physically see that a person has it. I watch everyday perfectly healthy adults and children walk right on with a handicap pass. And actually, if you walk into Disney and say you need a pass because you have a child with Down syndrome, you need something more to get the pass. Just having  DS alone doesn't get you a pass, as it shouldn't. Arina doesn't need a handicap pass. Is she good in lines? No, not many toddlers and preschoolers that I know enjoy standing in a long line. If your child has major sensory issues or can't walk yet at the age a child typically walks then yes, a handicap pass is needed.

Let me tell you how glamorous it really is to have a truly disabled child and actually need the pass for what its meant for!
It means actually waiting longer for many rides because we have to wait for a special handicap vehicle.
In rides that we have to transfer it means unhooking and carrying a feeding pump, oxygen, and 25lb dead weight child onto the ride.
It takes us longer to get on and off every ride. It takes longer to get us settled on the tram, because we have to tie down Jax chair for safety reasons.

I wouldn't change a single thing about Jax. We love every little bit of his gorgeous self! But caring for him is indeed a lot of work!
We do this because Disneyland is a magical place for us. Its a place where Jax can forget about the pain of having multiple medical issues. It makes him smile and it makes us smile! For us its definitely the Happiest place on earth!

 Watching Arina and her secret "thing" that her and the characters have. Because Arina is a kiss blower, now the characters will blow her a kiss, and when she blows one back they catch it! Its priceless!

I can only hope that in the future Disney changes their policies, requiring documentation to prove your disability. I hear that its coming, and if you watch the Today show clip, Disney is not tolerating this abuse of the handicap pass! I would love to see that cocky idiot's face when his handicap pass, and possibly even his annual pass is taken away because of his stupidity!
I mean come on people, be thankful for yours and your children's health! We'd give anything to not need the handicap pass! We'd give anything for Jax to be able to run and play with his little sister! But he can't!

Until then, if people think its so glamorous to get a handicap pass, we'll let them hire Jax as their "tour guide". We'll see how long it is before they bring him back and say, this is too much work, its not worth it!