Sean's 1st IEP meeting

Sean's IEP meeting  went well. Took longer than expected, but Sean will have speech 2x a week for 30 mins. 1 session will be in the classroom working on social conversation and 1 he will be pulled out for 30 minutes to work on things without distraction.

The SpEd teacher will work within his classroom 2x a week for 30 minutes on perfecting some things he's already doing. Both people will be going to his school for therapies. All in all it went well. We didn't have to fight for or about anything.

Everyone agreed that the speech therapist conducting the eval was not right for this preschool eval. She was completely off base on her assessment and subsequently her goals. So the goals were modified to better fit Sean's current need. Everyone commented that the speech eval didn't match any other part of the eval at all. It was really ridiculous. All of the other evaluations of him seemed to fit well with one another, but the speech one was completely off. She claimed to have not observed things that other therapists participating did see and put into their reports. And it's not that we're blind about where Sean is in his speech development.

PT put him right at 36 mos for gross motor. I feel like emailing our earl intervention "service coordinator" the results and telling her to shove that in the face of the evaluator that put him at 11-15 mos for gross motor development. Whatever.

We put in that therapists assigned to him should contact me 1x a week with some sort of note letting me know what worked & what didn't. That the therapist & teacher assigned should be assertive and let Sean know right from the start what's expected from him.

I didn't find them to be unreasonable. Certainly willing to make sure that Sean had something to strive for as opposed to remaining stagnant based on what we all felt he was capable of accomplishing. It was only recommended he stay in his current preschool because he is doing well there. All in all a good meeting and an easy transition to the school system for services so far.

As the school year ends....

I am amazed at how much mature my kids are compared to September. Meredith can read
 books and knows a lot of sight words. CRAZY!

Meredith & her friends have figured out how to work together.

It's so cool for me to be able to tell Meredith, "you have to figure out a way...." and she figures out a way. Whether it's how to play a game that she can play with Sean that she can enjoy as well or figure out a way to articulate why she's upset about something. Being in school this year has taught both of my children how to get along. How to be WITH each other. 

And she's graduating. Not into kindergarten since she just misses the birthday cut off date, but from preschool into pre-k (as most know it). She looks so grown up in her cap & gown.

And Sean is a part of the group. I never thought I'd be so happy to have conformity from one of my kids. But he's accepted. He's liked by his friends and is part of the birthday party circuit. I know that may seem silly to be mentioned, but it's something I've been so worried about.

I've seen shows on TV where children with special needs have been isolated. Heard from parents of kids with Down syndrome that their children are often isolated. Not because their kids aren't or don't want to be social, but because the outside world (kids, parents, etc) have shunned the interaction. The fact that Sean has friends that he looks forward to seeing and who look forward to seeing him is so amazing to me.

Of course it doesn't hurt that Sean has learned to make himself comfy & fit in with any group. Especially with Meredith's friends. It's almost as though he knows that in order to be accepted into their older kid world, he has to do what they do.

Sean has also taught Meredith and her friends the importance of including everyone. Sean has shown them that he is one of them. He's not different. Maybe younger, but not different.

Sean's end of year program was yesterday and it was such a joy to see him up there almost cooperating. He wasn't running off. He wasn't being a pest. He was being Sean. Reaching for his favorite books and messing with the buttons on the radio. Ooooopppsss.Whose idea was it to allow him to play dj?

In the past 9ish months, both of my kids have learned how to take chances. To do things they wouldn't have done before. Rob & I have also learned the great importance of finding the right people to help nurture and teach our children. Finding the right people has allowed us to let go a little more. To allow our children to learn how to take chances.

Running through the legs of a man? Much less one she's never met before? Never would've happened before. 

Run through a fountain & get their faces wet? Never would've thought in a million years.

Being in school this year has taught my kids to be proud of themselves whether they reach the goal or keep on trying. They're proud.  The kids being in school, this year in particular since Meredith had been in school in NYC, has also taught me how much more important them being proud of themselves is rather than us being proud of them. Even though us being proud is a very close 2nd. ;)

As we transition from Early Intervention into the school system for his IEP... I'm not nervous.Sean will continue at Trinity for the next few years. I'm thankful that my prayers for Sean's dignity were answered and will continue to be answered there. I'm more grateful than words can ever convey that the teachers and director of his school have welcomed him and us so openly. With each passing day I was ever more happy that I chose to send Sean to a typical preschool. This typical preschool. Even knowing he'd be the only kid with Down syndrome there. I'm sure I'll feel the same way next year.

I'm proud to be sending my kids to a school that has allowed
the other children to accept Sean so openly. That hasn't singled him out or made him to feel different.

I am sure that his IEP will be integrated into his school days and he will continue to do really well. Just like his teachers this year were able to integrate suggestions from various sources to help him this year.

Tomorrow is Meredith's graduation. I can't wait! I'm sure all the words that will be typed here are

"Mom's hormonal and cried through the whole thing. Here are pictures."

I allowed it to happen.

I allowed myself to go there. To that dark place of normalcy. You know the one. The one where you look at your son and wonder "is that normal? Do all almost 3 year old boys do that?"

I don't know why. I can guess why. Lately I've been feeling a tad inadequate. Meredith was far beyond the typical understanding & comprehension of the world at this age and I guess I took it for granted. With Sean it's not quite that easy.

Meredith wasn't "busy" or always on the move looking for trouble. But is he looking for trouble because I'm not doing enough or teaching enough. Is his brain bored? Are his hands restless? Is that why he's "doing that"?

I don't know. I don't know how to get out of this rut I'm feeling without feeling frustrated. It's a very vicious cycle I've set myself up with. Meredith always expects to be doing something. And it's my fault because up until recently we always were doing something. But doing something usually involves a lot of jumping up & down in an attempt to stem the tides of crisis when it comes to Sean. "Sean don't color on the wall. Only on the paper." "Sean don't tip the juice over and play in it please." Sean stop poking your sister with the marker?" "Dear god Sean, did you really just color on the rug with marker?" "Sean get off the skateboard."

For the record.... yes he really did. And they were red, pink & black markers on cream colored carpeting.

Some days it's just exhausting; the constant. The constant moving, getting up & down, constant saying "Sean leave the water bowl alone". Actually most days it's exhausting. I'd like to just one day tell Sean "hey lets sit & eat." And him sit and eat. Or at the very least be able to sit while I ate. Instead of me taking a bite & then chasing behind him while he picks up ants to watch their legs squirm.

So today I found myself saddened that I've allowed myself to be worried about "normal." Worried about being inadequate without a way to feel adequate. Worried that the constant isn't going to get easier. Worried that it is "normal" and I'll never find a way to be adequate or able to keep up. Worried that Meredith will get lost in the shuffle.

World Down Syndrome Day

Tomorrow is World Down Syndrome Day. It's a day to bring awareness to the world about Down syndrome, but most people are aware of it. At least all of the people we have the pleasure of coming into contact with. Sean brings Down syndrome right to the forefront anytime he meets someone. Not because we wear it like the scarlet letter, but because he is soooooo typical. People are genuinely surprised to see their ideas of Down syndrome crumble right before their eyes.

So tomorrow and all the days after, we'd like for all of our friends and family to do a couple of things for us.

We want you to teach your kids that not everyone speaks as well as others.

Teach your students that not everyone reads as quickly or does math problems as easily.

Teach your parents and grandparents that the things they thought about people/children with Down syndrome just isn't true anymore. That as times have changed in everything else, so has the understanding of what Down syndrome actually is, what can be affected and what people with Down syndrome are able to actually accomplish when they're believed in and given the tools to succeed

Teach your friends that if they have nothing constructive to ask (we welcome questions) or say, then please shove your wine glass to your lips for fear of alienating your friends.

Teach the world that EVERYONE has something to offer and everyone is a contributing member of society.

Teach your pediatricians, ob/gyn's, dentists, and any medical professional you meet that there is no text book Down syndrome. There is no such thing as a little bit Downs. It is not acceptable to not treat a person with Down syndrome for something you'd treat a typical person for.

Please reassure your sister, best friend, neighbor that if they get an iffy test result when they're pregnant, that Down syndrome is not a death sentence. Please help them reach out to "us" to see that our kids are just that. Kids. They are full of life and vibrancy and they bring that into everything they touch. Just like all kids.

And last, but certainly not least.... give yourself a hug. We have all been there. We've all said that. Know that as moms of children/adults with Down syndrome we do not feel like we're above using the word retarded. We have. We remember. We are not above or deny that we've had our own notions of what people with Down syndrome are like. We remember the fear. We remember the concern.

We have had to learn. Our eyes were forced open to many nuances that make people with Down syndrome unique just like the many nuances make EVERYONE unique. We have had to learn how to fight and speak up in areas we thought people were just being to sensitive about. Sorry Jenn Jenn.

We hope that as people get to know us and our children/friends/family members, etc that they see that Down syndrome is simply.... extra genetics. It means nothing more than a person may or may not have brown hair, blue eyes, one leg longer than the other, may read faster than his peers and may stink at math (like so many others).

2 1/2 years later... Would I change Sean's diagnosis?

There is a beautifully written story from a grandma to a little girl with Down syndrome.

She writes about how magical it was to take her g-daughter to Disney and how beautifully behaved & concerned about everyone else her g-daughter was. I think that's awesome! She also goes on to say that when her g-daughter was 4 or 5 she would've taken away the Down syndrome to make her g-daughter's life easier, but now she sees that would've made everyone else's life easier.

Anywho, while I think this tribute to love and the very spirit of a child with Down syndrome is beautiful, it made me wonder whether I'd think the same way.

I would 100% take away the Down syndrome if I could. I see how people react to my son. I see the looks of surprise that he's so "normal". I also see the looks of pity when he struggles. I see the preconceived notions people have about him & then don't even give him a chance to be "normal".

You know when he's walking up the stairs at the playground and someone says "Wow! Look at him go." Yes. Look at him go. 2.5 & walking up stairs. Imagine that. (And yes I rolled my eyes) Or when he's just being silly and uses paper bags as puppets.

But Jenn.... if you take away his having Down syndrome you'd take away his personality. His quirkiness. Yes and no. My son is more than Down syndrome. If Meredith is any indication (and she must be, she's ours), he'd still be a silly kid. He'd still be a holy pain in the butt (said with the utmost of love)who unrolls any paper product he can. Hence the nickname toilet paper bandit. He'd still be a 2.5 year old little boy who is happy, rambunctious, opinionated, stubborn and the most amazing little boy I've ever met in my entire life. So his personality may be different in some ways, but my mommy gut tells me he'd still be the same Sean I know & love and still allow to live in my house anyway. ;)

He'd still take off running (as all my friends have told me their boys do) every single chance he got. You know why? Because he's faster than me and he knows it.

He'd still love his sister enough to sit at the end of the slide to catch her when she asked him to.

He'd still throw a holy fit anytime we walked out of a major child directed store without something he would die without. Ya know why? Because he's a child. He learned from his sister (as I blush for allowing it to happen) that if you throw a big enough fit and scowl enough, mommy will probably get you what you want so she can be less embarrassed.

See where he learned that from?

And if he wants to ride his bike, but I want him to walk? Yikes! Want to snuggle, but he's got other ideas? Better shield your crotch because you will get kicked. How about if he wants to play in the water & you don't want him to? Not pretty.

Also... my kids behave MUCH (read 1000%) better when they're with their g-parents. I did too. I knew I just could not get away with being bratty to my g-parents. I acted well so I'd be invited back. ;)

I'm glad that g-ma hit the behavioral jackpot. I'm glad that her g-daughter didn't embarrass her in Disney. And I know plenty of parents of children with Down syndrome that say they wouldn't change it for the world. I'm not one of those parents. My kids will undoubtedly embarrass the snot out of me in Disney. They do in Walmart. Why not Disney? My kids will behave like greedy little brats. 

I want "you" to make no mistake about it. It may be selfish. It may only make our lives easier (though I doubt it), but if I could...... I'd take away Sean's having Down syndrome. I'd take away the extra doctor's appointments. I'd take away the drs treating Down syndrome before they treat Sean. I'd take away the therapies. I'd take away the lack of coherent speech (compared to his typical peers). I'd take away his learning differently. You know why? Because those things don't give Sean his personality. They don't make him silly. They don't make him a pain in the ass (hello? he's a 2.5 year old boy).

Yes. My son is wearing a turtle as a hat.

And he allowed his mother to put a giant fuschia flower in his hair. 

Those things do make his life less convenient. Those things make it harder for HIM. For Sean. He gets frustrated when his short fingers make it difficult to play the guitar. He gets angry when his coordination or lack thereof, make it difficult to get his foot over the stupid rocking horse. He understands that he sees someone else doing it & it's easy for them. He understands what people are saying to him & gets angry that someone can't understand him when he speaks.

So.. no. I wouldn't change Sean for all the world. I love my little man. I would change him having Down syndrome though. And if that makes me a bad mom then so be it. I love my son. I accept that he has Down syndrome, but I don't have to like it. 

Gross Motor Eval Update

Well.... after much wracking my brain trying to figure out how E could've rationalized that Sean was between 11 & 15 mos in regard to his gross motor development I took it to Sean's expert. She is the leading expert in all things Sean and gross motor together. His physical therapist. You know the one that sees him every two weeks.

We went through the areas that Sean supposedly didn't do well in and she looked puzzled. After some discussion and Sean's therapy session we went over the same Peabody test that E administered.

During Sean's session we looked at various items. One of which being going up & down stairs unassisted. Guess what! He did both. Unassisted. N was there to catch him if it was needed, but.... He also threw a ball with no problem. :\

Anyway... after going through the Peabody, N determined that Sean is at a 25-26 month level in his gross motor development. That would be spot on for where he's been since we began this journey. After that 26 month mark, Sean is scattered in what he can & cannot do until roughly 36 months. Where he can do certain things well and other things he cannot do. Again, right on track for where he's always been in physical development.

N looked through the Peabody test and made her determinations based on what she has physically seen Sean do. I had no input. Where Sean is lacking and what will always set him "behind" is jumping. Jumping is a big part of the 24-30 month milestones. He has the basics and has gotten air, but not consistently.

After all is said & done... we have stepped up the stair factor. Sean is no longer allowed to be lazy. At school, he is encouraged to walk up & down the stairs when helping him will not put the other 2 year olds to in danger. At home he is to walk up & down the stairs. Unless he is alone. Then he can do it anyway he feels most comfortable and safe.

Why was getting an accurate evaluation done so important? Well... One of Sean's old therapists told us that if Sean is not ready to do certain skills it only results in frustration for me and him when he's pushed to do it and cannot. It also prevents him from laying good foundations to other skills. Since so many evolve from one another.

Sean was & is clearly ready to do stairs unassisted. He goes up alternating feet, holding on with one hand. Going down it's the same foot, but holding with one hand. So that will be what we work on. Confidence and then alternating feet going down. Finally alternating feet without holding on up and down.

We'll also be working on jumping and balance. He can balance on one foot for a second or two, but we'll work on him being able to do it for longer.

His strength and tone continue to be good. His issue continues to be his coordination and his lax ligaments in the hips.

Sean will do anything for his therapist. They have an amazing relationship & I'm happy to have found her. I'm happy that I have a great relationship with her as well.

I can't believe it's been so long. An update.

Since I've posted here. Things have just been a little busy around here.

Christmas was very nice. We spent it at home celebrating as a family. I was very sick on Christmas Day. I didn't know it until the next day, but I had pneumonia.

Santa treated the kids very well and as they were opening presents, I was taking ornaments off the tree. The problem with getting a real tree is that you don't know if you're bringing anything else home with you. Unfortunately for us, we brought weevils home. When they started dying from the heat in our house, they started to litter the floor. Of course that didn't start to happen until Christmas Eve. It was very exciting (said with sarcasm).

Rob's parents came down, but they weren't feeling well either. We missed them though. Meredith came down with the flu. Thankfully she wasn't hit to badly. And she's the only one who got it. Thank goodness.

Sean.... Mr. Low Immunity stayed healthy. Go figure. We're still trying to find our way with this one. I may end up going back to NYC to visit with an immunologist to get some answers.

Sean also met with his new cardiologist. We found out that his pulmonary valve will definitely need to be replaced. It is allowing 100% backflow at this point. Dr. Greene has said that it's expected and we knew it would probably happen. We were really hoping it would've taken longer. Dr. Greene said not to worry about it. That his ticker was functioning just fine & wouldn't affect Sean at all.

His right ventricle is slightly enlarged and as he gets older, it will get bigger. When he's a teenager, he will have the valve replaced (probably by catheter) and the size of his right ventricle should immediately go back down to a normal size.

Our new year celebration was quiet and that was a good thing. We were supposed to goto a kid friendly party, but because of Meredith's flu we stayed home. It was just as well. We drank a few glasses of wine in our pj's while watching Dick Clark's Rocking Eve. We had fun watching the top 30 artists made famous by Dick Clark.

Next week we are meeting with a new geneticist. I wasn't thrilled with what I was hearing about the Charlotte area geneticists. So we chose a geneticist near Charleston. So far he has been a wonderful man with lots of helpful information. We're not seeing him because we need to know anything about Down syndrome. There are no answers for the questions we have at this point.

We're going to discuss how Rob & I both having the MTHFR mutation affects us in the future, our children and any future children. Rob tested positive for one copy of the A mutation and I tested positive for two copies of the C mutation.

Dr. Google has provided some information, but has posed more questions than answers as far as I'm concerned. What prompted us to get tested? There have been studies published suggesting that a person who has a mutation of that gene can have children with Down syndrome and people with tetralogy of fallot, independently. And that can come from either the mother or father and have an effect.

In other words, if Rob was the only one with the mutation, our children would still have a greater chance of having those 2 things, as well as many others. Each different mutation of that gene (there are be 40 known) can bring with it different effects. Having one vs. two copies also brings different "risks" or effects. Having one copy of two different mutations can bring still other effects. At least these are the suggestions.

Anywho... Rob & I have a child who has Down syndrome and tetralogy of fallot. Because tetralogy is generally not associated with Down syndrome (not like AV Canal), it stands to reason (at least in my head) that our MTHFR mutations could have played a role.

And if that is the case.... I wanna know how it will affect my kids, my future kids and us going forward.

Sean had a gross motor/physical therapy evaluation. I was not happy with it AT ALL. It seemed that when E came in, she had some preconceived ideas of what Sean's capabilities were. And Sean seemed to pick up on something about her. He didn't respond well to her; as he has to every other person that has come here to either evaluate or play with him.

At one point she said 2 year olds have a hard time conceptualizing things and 2 seconds later put a yellow duct tape "thing" meant to be a balance beam down on my floor & expected him to know what to do with it. Um.... he has no idea what you're asking of him if you don't tell him. He won't attempt to walk on tape that is folded and everything else. He did walk next to it, but she was to busy chatting to pay attention.

She never asked me what he could do, whether I had witnessed things that he wasn't demonstrating for her like EVERY other evaluator before her has. She asked me whether I wanted to know about his functionality and seemed annoyed when I told her he functioned just fine.

Now... I do not have my head in the sand when it comes to Sean's abilities. I know Sean is "behind" typical kids his own age. I know he is immature in his speech and I know his coordination is lacking. He's also as stubborn as they come! My kid!? Never!?

So I calmly asked how "behind" he was. E asked, "compared to a 30 month old with Down syndrome or a typical 30 month old?" I explained that Sean is in a class with typical kids. He is the only child with Down syndrome. I want for Sean to strive and be expected to "fit in" with those kids as he gets older.

Many parents do not believe in that. And that's fine. Whatever works for you & your family. Please don't judge me that I want my kid to fit in with his typical peers. In much the same manner that I want Meredith to fit in.

She rated Sean at between 11 & 15 mos for gross motor and then gave us some ideas for helping him with stairs and jumping. Um.... I have never met an 11 month old that would be working on going up & down stairs upright on their feet. Which is what would be added to his IFSP as a goal. In fact at 15 months, Meredith wouldn't even so much as look at stairs to go up on her feet. So something doesn't add up there.

After discussing it with his service coordinator, Sean is getting a new evaluation. He will not be retested on things he did perform and that's fine, but come on.

Both kids are doing well in school. Thank goodness.

Meredith has reached a point where she's picking up on different things from different kids. It has been allowing a lot of conversation about what various words mean and how they can be hurtful. I don't wanna shield her from "bad" words. She's going to hear them. But I want her to know how they make people feel when they're spoken. And how the hurt people feel can never be taken back.

It started with her not wanting to goto dance class which is totally not like her at all. She wouldn't tell us why. Then the other day Meredith and Sean were playing in the kitchen with their new play kitchen and I heard Meredith ask, "What are you a moron?" I was caught so off guard I didn't know what to do. Especially since moron is not a word in my vocabulary. I will and do say a lot of things children should probably not hear, but that's not one of them.

When I called her over, I asked her where she'd heard it and she immediately started sobbing. It was futile to try to talk to her about it then. So I asked her if she knew what that word meant. She said, "no." I told her that it meant stupid or not smart and calling someone a moron was calling them stupid. I asked her if she would like if someone called her stupid or not smart. And she started to cry and said, "no. that it would make her feel bad."

She still wouldn't give up the info I wanted though. Was her teacher calling people morons? Was a child? When she was calmer, she explained that there was a little girl in her class that says "ugly things" and sometimes says them to Meredith. She said she's gotten in trouble by the teacher for saying them back. So I let Meredith know that she shouldn't say "ugly things" back to anyone. If someone is saying ugly things to her, she should get up & walk away. She should go play with someone else. If her teacher asks why, then she should tell her she doesn't have to listen to ugly words and be called ugly things.

I told her that her teacher would understand. And then I spoke with her teacher and let her know that Meredith wasn't being defiant if she got up and walked away from an activity and what I had told Meredith.

I'm actually happy that it allowed us an opportunity to talk about it. I want to give my kids the tools they need to actually handle situations that make them uncomfortable. I don't want to shield them from things they will inevitably have to deal with. And that includes people using words that will upset them.

Phew.... that was some update. I really have to be better about getting on here.

As usual, our new year is proving to be quite exciting already. And it's only going to get more exciting if we continue on this trend.

Therapeutic brownies? Huh? What?

Yup. Brownies are not only delish, but also serve as therapy for little boys who dig that kind of thing.

Physical and occupational therapy.

Because first you have to get to your work surface

Then you have to stir

Using the pincer to place the cupcake wrappers ever so gently. Check out the skill

Feeding therapy

Yum. Seriously. Why else would you make brownies if not to eat the batter?

Also serves as play therapy because they have to learn to get along and not throw batter at each other. They have take turns putting the cups into the pan and most of all they have to have patience.

Waiting for the big pay out. 

Glad Meredith and I finally let Sean into our little brownie making bond. 

Maybe I just hate labels

I do hate labels. I understand them, but I don't like them. Most labels conjure up negative images in one's mind. Some labels have spectrums. Spectrums force people to ask questions. It forces people to look beyond the labels.

Down syndrome does not have a spectrum. Down syndrome is what it is. It is 3 copies of the 21st chromosome. You either have Down syndrome or you don't. There are variations; mosaic down syndrome (where some cells are affected, but others are not), translocation down syndrome (where part of the chromosome is attached to another chromosome, but there are still 3 copies) and regular, plain ole down syndrome (all cells contain 3 copies of the 21st chromosome and they're where they're supposed to be on the karotype).

This is not to say that some people aren't affected more or less by their extra chromosome. It's really luck of the draw. But there isn't a little bit "downsy". There isn't a spectrum for learning or understanding (yet). There's nothing to force the average person engaged in an average conversation to look passed Down syndrome. To look passed Sean's slanted eyes. To look passed his short fingers and lack of true conversation.

My experience has been that when the average person, who has no experience with Down syndrome, hears "Down syndrome" negative connotations will usually enter their mind. When I have brought it up, some people look surprised that Sean is so "normal". Some give a look of pity.

These negative images certainly entered my mind when I first learned Sean had Down syndrome. It's the reason I thought I'd be raising a 50 year old with the mindset of a 5 year old well into my later years.

I've mentioned in the past that I had an abnormal psych class in which the professor forced the class to look beyond psychiatric labels to find the true meaning of the illness. Why did he hate labels so much!? I mean geez... they wrap everything up into a nice little bow right? Well... yes & no. They wrap EVERYTHING up into a nice little bow and usually the things that shine through are the negatives.

What does this have to do with the price of apples in China?

My friend and fellow blogging mom to a wonderful little boy with Down syndrome, Maureen (check out her blog here), posed a question on a social network. She asked the local Down syndrome community whether it had ever played the "Down syndrome card".

I put it out there that people playing the "Down syndrome card" bothers me. I don't agree with it, but I don't judge. If it works for other families that's fine.

What I don't like about it is that I feel like it takes away from forcing people to see passed the Down syndrome. "Oh... little Johnny is acting up. Again." "Oh don't worry about it honey, he's got Down syndrome." It allows people to see Down syndrome as a negative, in my opinion. In much the same way most feel the word "retard" should be eradicated because of it's negative connotations. It allows people to be dismissive. It's insulting.

I'm guilty of it as well. When we lived in NYC there was a family living on our block whose son has autism. After the major 27" blizzard a couple of years ago, he & his older sister went out to the corner of our street and started shoveling snow. At the time Rob & I thought they were nuts. Who in the right mind goes out to shovel snow in the street in the freezing cold when they don't have to? We thought his older sister was out there placating him and making sure he didn't get hurt. I dismissed what may have been his motives because he has autism.

It never occurred to me that maybe he was just helping out his neighbors and the sanitation department by doing his part. I have obviously re-examined that and many other situations because I have been forced to.

I fight each & every single day for Sean to be seen as a regular ordinary kid with upwardly slanted eyes.  I struggle with the notion that Sean's bad behavior in a restaurant could be pitied or dismissed simply because he has Down syndrome. Especially when his older typical sister is throwing the same fit with a more demure style.

There are other things that some children with Down syndrome are affected by. Some children with Down syndrome also have Autism. Some have sensory issues with no Autism diagnosis, hypotonia, etc. So I get that some people (child or otherwise) need assistance because of those things. My issue is the label. Down syndrome cannot & should not be used as an all encompassing label.

In my opinion, using the all encompassing label of Down syndrome allows people to dismiss Sean for being Sean. It allows people to assume that just because your child has sensory issues, all children with Down syndrome have it. And therefore Sean must have sensory issues as well.  It allows people to assume that because your child has low muscle tone, all people with Down syndrome, including Sean, too. You get the idea.

I don't like the constant uphill battle I seem to be fighting to get people to understand that just like everything else, there are differences between people with Down syndrome. Many differences. To force people to see that just like typical people are not all alike or one nationality of people are not all alike, people with Down syndrome are not all alike.

My other issue with playing the "Down syndrome card" is that it's generally used in negative situations. Why can't a child with Down syndrome score a 100% on a spelling test and their parents say, "yeah. it's because he has Down syndrome?" Why can't a child be "so well behaved" and the parents say "Yeah it's because he has Down syndrome?"

Why can't a child be coloring on the booth at Denny's (shooting my son a total side eye) and people just be happy with "yeah he's 2. What are ya gonna do"? I swear to you no less than 3 times this year has someone dismissed Sean by saying "oh it's ok. I have a special needs (insert family member here). I understand." Um.... no he's 2. He colors on walls and booths and basically does the complete opposite of whatever I tell him to do. Hey come to think of it my typically developing 4 year old does the exact same thing. Just with more gusto and passion. OY!

I just want my son to be seen as a 2 year old. Not a 2 year old with Down syndrome.

Thought I was passed "it"

With everything I've had going on lately, I guess I thought I had gotten passed the queasy feeling I used to get when discussing down syndrome and my son. Not that I thought we were passed the fact that he needs some extra help (like a lot of other kids). I guess I thought I was passed the insecurity.

Yesterday I totally proved wrong. When talking about school with a friend, I mentioned something about down syndrome. Someone said "Oh I noticed it right away that he has down syndrome."

I don't know why, but I was totally caught off guard. I'm not sure why. It's not like he doesn't have down syndrome. He does. I think it also had a lot to do with HOW she said it.

I've always wondered what people really see when they look at him. Does he have pronounced physical features of DS? I see him everyday. I also know what I'm looking for. So I see it. Most of the time.

Either way it made me sad for Sean. It brought back all my insecurities. Did she notice right away because he's not doing something? Because he is doing something? How come I'm not doing more for him to "hide" his ds and help him fit in more? how come I even feel like I need to worry about that?

I've been in a total funk over it since yesterday. I've been looking at pictures and videos of friends' kids who are the same age only seeing the things Sean can't do yet or has no interest in doing like the other kids. I thought I was passed that. I thought I was passed the point of comparing because there is no comparison.

I guess I'm either not passed it or it's just that easy to drag me down. Either way I'm not happy about it. I have got to pull myself up and move on. My brain just can't handle any negativity. There's just no room for an all consuming elephant in the room.

Here's the thing about stress

Disclaimer: I'm going to rant. I'm going to spill it right here. If you're going to be sensitive, claim I'm bashing anyone, boohoo at me or anything else.... don't bother. If you don't like it or don't wanna "hear" it, don't keep reading.



I have been hypothyroid (Hashimoto's) for years. Years. (That's important) I had bloodwork done in NYC and brought it down here to my new dr. He didn't like my TSH numbers saying they were to high and not in the newly recommended 1-2 range. So he increased my Synthroid. He said I should come back for my follow up 6-8 weeks so we can see how I was doing.

Today was that follow up. The day started out like any other. Me barely able to keep my eyes open because I hardly slept the night before. Kids demanding everything under the sun like little gaitling guns firing off their rounds.

The exceptions... instead of snoring, it was the "did I hear something or someone come in the door?" The sound of the heater turning on. The searing pain in my ears that felt like someone shoving a qtip in to hard. Meredith waking up because she'd had a bad dream. Sean waking up WAY to early because he had decided not to nap in favor of falling asleep to early.

I dropped the kids off at school and headed off to my dr's appointment. I waited & then did the triage. Dr walks in and we discuss my ears. They look good. Pain is probably coming from the brewing sinus infection causing congestion. Don't even get me started.

How am I feeling otherwise? "Well doc... my wrists hurt. Which I find odd. And I'm tired, but that's because I haven't been sleeping. And... I'm always cold. Always. I don't know if it's because my thyroid is acting up or if I was just kind of expecting it to be warmer down here compared to NYC."

He feels around.... "Your thyroid does feel full. We'll check all the thyroid hormone levels. Not just the TSH."

But...... lets talk about this fatigue. Oh yes.... Lets. Lets discuss it. PPPppppppppppllllllllllllleeeeeeeeeeeeaaaaaaaasssssssssssssssseeeeeeeeeeee.

He says there are two types of fatigue. Mental and physical. He thinks I told him I was tired in relation to the thyroid. And so to disprove that (or so I assume) he says, "Having a child with special needs is stressful. Very stressful. It's perfectly normal for a woman in your position to feel stressed."

Now here's the thing about having a child with special needs. IT"S NOT STRESSFUL!!!! Sean is a typical 2 year old.

Wanna know what's stressful? A son who can't seem to rid himself of a medication resistant bacteria  and doctors who proclaim that "this" antibiotic is going to finally do the trick. Except that their miracle cure has already been tried. They'd have known that if they had bothered to read the notes THEY wrote.

Stressful is spending every waking minute looking at, doing something for, arguing with or any of the other numerous things that can be placed here for my children and then having them end up in my bed that night with their feet touching me. It's not that I don't love my children and don't wanna comfort them. It's just that I'm tired of seeing them. Mommy needs a little down time too.

Stresful is knowing that there are 2 major holiday parties coming up in a few days and I'll probably be taking my kids alone. Stressful is knowing that my incredibly shy daughter will be stuck to my leg and grunting at people who try to say hi while my son tries to take off at full speed through the crowd.

Stressful is having a dog who was just treated at the vet for God knows what and thensome poop in your house on your freshly scrubbed floors and your son discovering it. Oh yeah fun times. Or a dog who hurts his damn foot the day before Thanksgiving. My dogs are high maintenance. Lets leave it at that.

Stresful is not having consistent help or any cooperation.

I could seriously go on & on. At the end of the day, I smile. I smile through it all because complaining to anyone is not worth it. It doesn't change anything. I watch my kids & devise new ways to try to outsmart them. HA! At the end of the day I find my silver lining.

So Doc goes on to say that we need to start looking into healthier eating. Yes.... healthier eating would be nice. I'm already eating healthier than I was. My new nickname is granola. Healthier eating also doesn't change the circumstances surrounding our lives.

We should also discuss exercise. Doc... I have a 2 year old & a 4 year old. I get more exercise in a day than you probably get in a year.

Maybe.... you need to talk to a therapist or clergy. Immerse yourself in religion or yoga.

Um... I know why I'm tired. I don't snore. I'm in relative good health. My husband snores. I'm a light sleeper. My husband hasn't been home at night. I am always sleeping with one ear cocked to the world to make sure we're safe.

My kids... barely make it through a night without waking up. My son... would sleep clear through 13 hours if his ears didn't hurt & his nose wasn't congested, but drs.... have so far been unable to help clear that up. And so we see dr after dr. Ya know why? Not because he has special needs.... but because we have relied on buttheaded drs to help us and all they've seen is a kid with down syndrome who "gets sick more than other kids because of it" AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH

My 4 year old is afraid of the dark & says she has bad dreams. She in turn comes to wake me up.

Broken sleep = tired the next day. 1+1=2    It has nothing to do with special needs you dingbat! Wake a chick up at night and she'll be tired in the morning.

So yeah... I need to talk to someone. My travel agent. I need a few days by myself on the quiet shores of some deserted island where there is no one demanding anything, no schedules to be maintained, no dogs that stink the place up, etc. A sandy shore where I can just breathe. And maybe drool. But definitely breathe.

I told the dr that my mental fatigue has been there for a long time. That's nothing new. I have figured out ways to calm the mind for bed. And I always manage to get out of bed & keep going. Physical fatigue is a direct result of my not sleeping the last few weeks. Cure my kid and help the other one realize that the dark isn't so bad.... Then we've got the makings of a good night's sleep. Help the husband not snore? HA! Even better.

He finally agreed that my fatigue was just the result of broken sleep and said "I'm not ruling out biomedical causes..." There's no biomedical cause. I just need some unbroken sleep. "We'll have your results tomorrow." He made me feel like my thyroid issue was completely made up and that I haven't been dealing with it forever. He's the one who wanted me to come in for a follow up. He's the one who upped my synthroid because he didn't like my numbers. I didn't. I got my bloodwork from my old dr and went about my merry way.

Don't tell me my fatigue is because I have a child with special needs. The drs give me more stress than he ever will. Well... short of the broken computers he's been leaving around.

Daily Adventures of the Scotty Rocks

How's that for a title to an update?

What have we been up to? Not much actually. The kids are silly.

And doing well in school.

Walk for Wishes fundraiser. 

And Sean doing the Hokey Pokey.

Seriously.... there's one at every party

Meredith is doing so well at gymnastics. It's like she was born to be an olympian.

Made pilgrim hats at school.

Helping mommy put the couch together. Apparently he felt I was doing it wrong. By the way.... we got a new couch from IKEA. YAY!! The cover comes off so I can clean it. FABULOUS!

Check out those feet. They grew a whole shoe size recently. Holy growth spurt. 

All in all we've been pretty boring. I'll have a factual update soon. You know filled with stats & medical and therapeutic updates. We have a few. Sean & Meredith are doing phenomenal things :)

I know the pics aren't good quality, but I didn't have my camera. I need to start carrying it around again.