Posts Tagged ‘special needs’

10 Things I’ve Learned From My Child {With Special Needs}

Sunday, August 19th, 2012 by by

When I first read today’s guest post, I cried. This post is an absolutely beautiful piece written by Sandy, a mother of an even more beautiful daughter named Adeline. Adeline has long blond hair and an engaging smile. Adeline also happens to have Down syndrome. When I first found Sandy’s blog, I immediately fell in love with Adeline. Maybe it was because she has such a sweet face. Maybe because Adeline was one of the names we had originally picked out for our own daughter. Whatever the reason, I just love this little girl I’ve never met. And she, along with so many other children with special needs, remind us that We Can Do All Things no matter how big or small. ~Katie

The day I gave birth to Adeline, I knew very little about children with special needs.  We were released from the hospital together.  In my instructions from my doctor, she told me I was not allowed to drive or lift for two weeks.  In Adeline’s instructions, I had to have her back at the hospital tomorrow.  My  husband had to be back at work, and with no immediate family around, I had to disregard my doctor’s instructions to care for my baby.  Adeline had severe jaundice and needed to have her blood tested every day at the hospital for a week.

During this time, I also needed to find a new pediatrician fast – a pediatrician that would respect my baby and give her the best care.  I had previously been using a pediatrician with my other children, but I was shocked when I experienced my first negativity.  She came to the hospital to see Adeline and told me, “well, she is a mongoloid.”  I felt like she socked me in the stomach.  I saw my beautiful baby, and she just called her a “mongoloid.”  She continued to tell us all the things Adeline would not do.  Needless to say, I knew I could never allow Adeline to be seen by her again.

That day, when I walked down the hall to the operating room to have a c-section, I had no idea what I was walking into.  I had no idea how this new precious child would change and challenge me to a level of parenting I never knew existed.  This child forced me into action.  I quickly had to become a medical expert in down syndrome, special education teacher, therapist, and advocate.

I am so grateful for Adeline’s life.  It is filled with a purpose and destiny.  Our family has learned so much from Adeline.  We will never be the same.

Ten things we have learned from Adeline:

1.  To rejoice in the small things.  We were so excited when Adeline learned how to put things “in and out.” (more…)

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Holy Cow – 10 weeks to go?

Friday, January 6th, 2012 by by

What I want to know is how, exactly, I got to be so pregnant. Of course, I think it snuck up on me mostly because of the holidays. I’ve definitely been feeling pregnant, and it’s hard to ignore the huge movement and rolling and pushing that’s going on in my belly these days, but in my head I just had my 20 week ultrasound…except I’m 30 weeks along now.

And that leaves a little over 2 months to go. Say what?

In one way, I’m ready for this baby to be born and to get on with it. In another way…not so much. I plan to enjoy these last months of pregnancy in a way I wasn’t really able to with Danny. In just 2 more weeks, I’ll hit that point in the pregnancy where – frankly – all hell broke loose. Instead of relaxing, picking up baby stuff, and oo’ing and ah’ing over all the clothes and toys and stuff being gathered, I was attending way too many appointments, getting weekly ultrasounds, and standing in the shower staring at my moving belly, wondering just how I would manage if this baby I carried was indeed severely disabled. Those are not exactly warm and fuzzy memories.

I find that, as I approach the 32 week mark, I am finally starting to lose the calm and mellow view I’ve had of this pregnancy. I expected to be worried the whole time, but really it’s just beginning to creep up on me. This child is a very active boy, and the movements are large and strong – which goes a long way to reassuring me. My biggest fear, though, is that I’m going to get sick sometime in January…a notorious time for the sickies to hit anyway…and it’s going to freak me right out.

Thankfully, my doctor understands all this. At my 28 week appointment, she told me she didn’t need to see me for 4 weeks (though usually I’d transfer to every 2 weeks at that point). I’m comfortable with that for now, since really things are going great and visiting the doctor next week with the boys still off school would be a massive pain in the butt. However, she told me that if at any point I am worried, for any reason, all I need to do is call and they’ll get me in. We’re also at the point now that we are doing monthly ultrasounds, not because there is any reason to think there’s a problem, but just because it makes us feel better. (more…)

Introducing…

Monday, August 29th, 2011 by by

Well, I don’t really know who I’m introducing, but he or she is the reason for my being so quiet on here. We have all been settling into our new routine with the start of school, but a large part of that has been me settling into the new routine with this little interloper.


Hi, everyone!

What that really has amounted to is a lot of napping, reading, and watching movies while the boys are at school. Why? Well, frankly, because I can, and because this little belly monster is sapping nearly every bit of energy I have – and the remaining bits are going toward housework and laundry and running errands. I think often of sitting down and blogging, but then the couch calls my name, and who am I to ignore it?

Pregnancy isn’t something I was always convinced I’d be doing again. After Danny was born, to be honest, I was so scared and shaken and overwhelmed that a large part of me was fully convinced that there would not be any more children in our house. But then, at the time, I was being warned that Danny could easily be…well…much worse off than he is. And even then, there was a little voice in the back of my head saying I wasn’t quite sure we were done – I just thought I wanted us to be.

3 years later, here we are.

In full honesty, it’s not always easy. There are times I wonder what on earth we’re getting ourselves into. There are times I’m a little bit terrified that something might happen to this little one as well. People talk often of the fear and worry that goes into pregnancy after loss; I don’t think a lot of people talk about the fear and worry that goes into pregnancy after a special needs baby. (more…)

Danny’s World

Monday, July 18th, 2011 by by

I’m not sure where the shift started, but over the past few months, I’ve moved from fearing Danny’s future to embracing it. Maybe he will always need support. Maybe he will not be able to do all the things we hope for our children. But he’s just such an incredible kid that I can’t help loving who and how he is. I think part of it has been moving away from therapy; now that I’m not ensconced in it, being reminding multiple times a week of Danny’s shortcomings, I can shake it off and celebrate the good. He has been opening up, though, too, and I’m getting glimpses of how he sees the world.

It’s pretty awesome.

I’ve learned not to take anything for granted. John is over the moon, because after 3 years, he’s finally hearing magic. “Ah-ee!” No, there’s no /d/ to be found, but it’s daddy all the same. He repeats it, and sometimes, he says it on his own. He’s slowly figuring out the world around him, in his own way, and trying to discover how to make things right. If I stop pushing him on the swings, he’ll reach around and try to push himself. If I give him a Pop Tart and that’s not what he wants to eat for breakfast, he’ll put it away in the fridge, because that’s where food goes. If he has anything that isn’t food that he wants to get rid of, though, it goes in the sink, because he knows that’s where his cups go and shouldn’t everything else, too? (more…)

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Make A Wish

Saturday, July 16th, 2011 by by

Yesterday, we had our Wish Presentation… The big reveal.  Up to this point, all we knew was the dates and that we would be at Disneyland.  The big reveal was where we got the details, the itinerary.

We arrived at Five Guys Burgers and Fries at 5 PM to find a table covered in a Disney table cloth, with Make A Wish Balloons and a Mickey Mouse Balloon.  On one of the chairs was a Disney Backpack filled with Goodies for Joey – markers, crayons, coloring books, a Buzz Lightyear computer type thing, a game.  Stuff Joey would love.  As he opened the backpack and took out the toys, he wanted each one opened.  So while he played with his new goodies, our Make A Wish granters sat down with me and went over the Big Wish.

Monday morning, we will be picked up at 3 PM by a limo and taken to the Disneyland Resort, where we will check into our hotel to begin our magical trip.  This day will be spent settling in, enjoying the pools, the big water slide, and Downtown Disney.  We will choose our dinner this night and settle into bed after setting our character Wake up Calls.  Most of our meals we will be deciding on our own, courtesy of Make A Wish.

Tuesday morning, we will rise bright and early and enjoy a breakfast of our choosing, then head into the parks for the first of our magical days.  At noon, we have a private meet and greet with Joey’s very favorite, the one and only Mickey Mouse, in the Wish Lounge (a private room for Wish Families to enjoy during their Disney trip).  The day will be spent enjoying all Disney has to offer, and we will spend the next few days making reservations for any dining we wish to have on our trip.  That night, we will enjoy the fireworks while we celebrate how far our little man has come since the day he was diagnosed.  Then off to bed to dream more dreams.

Wednesday morning, we will be dining in Goofy’s Kitchen for breakfast, meeting so many wonderful Disney Characters at this buffet style, kid friendly Restaurant.  The it’s off to the Parks again for more fun filled time.  I anticipate cotton candy, rides, and lots of smiles (and tears from mom).  We are thinking of doing World of Color at the end of this night. (more…)

I’m a Little Ashamed of This One

Thursday, July 7th, 2011 by by

There is a part of me that just wanted to pretend this didn’t happen at all, but there is a larger part of me that wants to put it out there just so others know, maybe, that they aren’t alone.

I’m not a very angry person in general. I get upset, but I rarely get angry about it – sad, frustrated, annoyed, certainly, but it takes a lot to make me mad. I also, most days, have become totally accepting of Danny’s CMV and special needs. Yes, they suck, but it is what it is and he is who he is. Who he is is pretty amazing, he’s making good progress, he’s doing a lot better than I’d dared hoped when he was diagnosed with CMV 3 years ago, and there’s nothing I can do to change it anyway.

So it hit me out of nowhere the other day at the grocery store.

I was in the parking lot looking for an open spot when someone cut in front of me. Oh well, no big deal. She was driving a mini-van, she had a huge cigarette in her mouth, and she was pulling into the expectant/new mother parking spot. I rolled my eyes and drove past, finding a spot a little up the aisle. Go figure, someone else who decides just to park in the closest spot available – but at least she didn’t use the handicapped spots. I got out of the car and started into the store. The woman was a little ways ahead of me, cigarette still in her mouth…and obviously quite pregnant.

My gut reaction was to hate her.

I can’t say I hate HER, more what she represents, but it was there and immediate either way. As accepting as I am of our circumstances these days, it still really bothers me that other women can do things that blatantly fly in the face of their pregnancy and still have babies that are perfectly fine, you know? Every day, pregnant women smoke, drink, eat, and behave in ways that risk their baby, and it all works out for them. I’m glad for the babies, but it just doesn’t seem fair.

It wasn’t until late that evening that I was able to let it go. All the best to that lady; I truly feel bad for my anger. That doesn’t mean it wasn’t there, though, and probably won’t be there the next time.

Danny and the iPod – Learning Through Play

Monday, May 23rd, 2011 by by

Since the day Danny got his hands on my iPod (aka, the day I finally gave in), Danny has adored the thing. Now, this is not overly strange in any way… Both of my kids are very technologically inclined, and honestly, they both love to play on it. The thing that makes it worth noting with Danny, though, is that it’s almost like a security blanket to him.

At first, it was like my dirty little secret. I mean, when it comes to parenting most kids, as far as I’m concerned, things like the computer, ipod, etc, should be limited. It certainly should be embraced – it’s a part of the technology that defines our society these days – but it shouldn’t be an hours and hours on end kind of thing. Eric self-limits himself even further than we limit him a lot of the time; he is allowed a certain amount of time each evening on the computer, and often he shuts it off halfway through. Danny… Well, Danny would go all day long, probably, if we let him.

The thing about it is, though, is that he’s actually getting something out of it. He carries the iPod around sometimes with the clock running, and instead of doing other sensory seeking stuff like tearing his ears off and rolling around on the floor, he just looks at it now and then. The numbers scrolling by give him whatever it is he needs, and he goes back to playing or whatever else it was he was doing. He won’t be actively engaged with the iPod, but (more…)

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Moog Workshop Recap

Saturday, July 17th, 2010 by by

I have to say, after spending 4 days at the Moog Center, the workshop was everything and nothing like I expected it to be. It was certainly a well spent and worthwhile 4 days for the most part, and I’d highly recommend the workshop to anyone who is receiving limited services for their oral-deaf child right now.

I’m not sure what I was expecting going into it. I’d heard that it was great. I’d heard one family tell me that the 4 days there made the difference for their child to start speaking, though I knew better than to expect the same for Danny. I’d heard that it was chock full of fabulous information. Day 1 was a bit of a let down as a result, because it was, well, day 1: covering the basics. Living where we live, receiving the services we have since we found out Danny was deaf, it was basically a whole lot of recap for us. It was good reinforcement that we knew what we needed to know (more…)

Busy Week

Sunday, April 25th, 2010 by by

I love Spring. Love It. This year, we are enjoying the sunshine. Ava hasn’t had a real chance to play outside and enjoy the outdoors, so this year I hope to introduce her to nature. I don’t care how much equipment we have to lug around with us – Ava will feel the breeze on her little face this year!
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Things are a changin’

Wednesday, February 17th, 2010 by by

I’m annoyed today.  I don’t think some people realize how difficult it is to get GI, Genetics, ENT,  a nutritionist and a speech pathology at the same appointment, at the same time.  It takes a while.  This was to be a very important appt.  We’ve gotten so much snow the last 48 yrs that the roads weren’t clear.  Wrecks everywhere.  Obviously this appointment wasn’t happening today.  I called this morning to reschedule.  They said they were already into June for just GI and Nutritionist alone but they wanted to get her in sooner.  I got a  call back 5 minutes later with an appt with  ENT and the nutritionist this Thursday.  (insert cringing here)  They will get the Full Team appt much sooner for us than the receptionist.  This ENT that Ava is seeing is the same one that did (more…)

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