Wednesday, October 19, 2011

The Cults of Mothers

So there was something interesting I didn't know when I was pregnant, before I had Seth . . . all about moms and their groups. Just to make myself giggle I'll call them cults. The cults of moms. It's a bit ominous isn't it?

Okay so what do I mean by the cults of moms. Well you have the yoga moms, the breastfeeding moms, the formula moms, the organic food moms, the disposable diapers moms vs. cloth diaper moms, there are whole worlds of moms that have differing views about everything. So many choices in being a mom today. Are you going to use cry it out or are you going to comfort your child?? And there are moms out there that are such sticklers for these rules, for these ways of life that I compare them to being cult like.

I mean who really cares if you are going to wear your baby or stick them in a stroller? Or if you don't want to breastfeed? Or if you don't introduce your child to cow's milk but you want to use goat's milk instead because it is more gentle? I mean who really gives a flying fuck?

Apparently a lot of moms give a fuck. So what does this post have to do with Down Syndrome. I mean not that everything I write has to do with DS, but it is in a lot of what I write. Well I found something really interesting. The moms of children with DS also have their own little cults. Their own followings. So I wanted to review a few of the debates that go on in the Down Syndrome community among parents and why each side feels like they do and yes I'll even give my own opinion. Not that you should give a flying fuck about my opinion . . you should do what is right for you and your family.

Now I'm going to start off with the less controversial ones and move on to the bigger ones.

Breastfeeding vs. Bottle feeding

Breastfeeding is great, it's a beautiful thing. Here's the thing though, a lot of kids with DS have a poor suck reflex. Seth physically could not breastfeed. He couldn't do it. So after six months of pumping being a first time mom of a kid with DS, my supply ran out. Stress, aggravation, lack of sleep . . . so many reasons why it could have happened but it did. I felt horrible. I felt like I failed at something that I really wanted to do with my child. I wanted to give Seth all the nutrients his body needed from my breast milk and it didn't work out that way. And a lot of people then made me feel bad about this. Like it was my fault. How dare you make me feel bad about that, how dare you insinuate that I did something wrong for my breast milk to dry up. Sorry I had to get that out.

So while I do feel that breast is best, I understand that we are all different and some of our lives doesn't enable breastfeeding. Some moms have to go back to work and can't pump, some moms physically can't breastfeed and some moms just don't want to - and that's their choice. Remember whatever works for you and your family is best.

Baby-wearing

Okay so baby-wearing is what some moms call "crunchy", meaning it's like granola and it somehow means you are one of those hippy dippy trippy moms that wears their child and breast feeds and does the whole organic food thing. Well not these days. Tons of people, moms and dads, wear their children. So where is the debate, where is the problem? Well some physical therapists will tell you that wearing a child with DS causes their hips to splay which is not a good thing because of their super flexibility. There are other ways to wear your child where their legs aren't splayed far apart, such as wraps that kind of cocoon them. If you are worried about their hips then go with a different type of baby carrier. Personally Seth's PT told us that as long as we weren't using it more than 1-2 hours a day then it was fine.

Nutritional Supplements
This is a big one in the Down Syndrome community. Now when we think nutritional supplements we think vitamins and hey aren't vitamins good? Well it depends on your thought process about DS. Some parents think that the chemistry of people with DS works differently than with typical people and that certain supplements (cough Nutrivene D) will help their child physically and cognitively.

Ok so for the first 3 1/2 years of Seth's life I didn't buy into it. But the other day I did and I ordered the vitamins and we will be starting them soon. Why did I do it? Because I did my research and saw from blogs and message boards and other moms that doing this nutritional supplement program really helped their kids. And as a mom if I don't try everything that I think may work then I feel really guilty. Like what if this does improve the quality of Seth's life?? What if it makes a big difference? I don't know if it will but I'm not willing to pass it up if it can. So I will start the program with Seth and let you all know how that works out for us. I do know one thing . . . it can't hurt.

Sign Language

Really sign language is on this list? I'm all gung-ho for sign language, you all know that. But some moms think it will actually hinder verbal language in the long run. I don't think so. Speech is a big area in which lots of kids with DS struggle. And a lot of people make the mistake in thinking that the struggles with speech come from cognitive inability. It doesn't. Seth understands everything that is said to him, which is what is called "receptive language". However his "expressive language", the language that he responds with, is lacking (well the verbal part anyways). Why? Well IMO it all comes down to the low muscle tone and a physical inability to produce the sounds. Also for other children with DS it can be due to hearing issues which I talked about it my oral motor post. Mainly I believe that any inability for verbal output is due to a physical issue, not a cognitive one. Let me mention that there are also many kids with DS that do really well with verbal language so it's not an issue for every child with DS.

So why not sign language? Why not give your child a large vocabulary and the ability to tell you their wants/needs in a way that they can? Seth is becoming really verbal these days, repeating everything and spontaneously saying words in context to the situation. But the thing is, he already knows these words, he doesn't have to learn them from the start. So here Seth is, with the knowledge of 100-150 words through sign language, and now all he has to do is verbalize them. I think that is much easier to do than learning a word instantly and having to reproduce the sound.


Oral Motor Therapy

We went over this in my oral motor therapy post. Some moms dig it, some moms don't believe it works because there isn't enough evidence. Personally I think my experience with Seth and seeing it work for other kids with DS is all the proof that I need.

Diapers vs. Elimination Communication

Ok so this might not be an exact debate but it is something that moms choose. Do you put your child with DS in diapers or do you keep them bare and cue into their elimination cues. I don't know if you have ever heard of elimination communication or EC for short, but it is the act of keeping in tune with your child's bowel movements and urination so that you can read these cues and then put your child on the toilet when they have to go. The process is that eventually the child with understand to use the toilet and will be potty trained earlier. I don't really know that much about it because I don't do that with Seth. Seth is still in diapers and we are potty training him the traditional way, with a potty and all that jazz. If you are interested you should do some research into EC.

the word "retarded"

Some of us DS moms hate the word, some of us don't mind, some of us it mildly annoys, some of us it outright infuriates. I'm with the infuriate group. I hate the word "retarded". I hate hearing it in the street, by medical and educational professionals, by other parents and friends and family. . . I HATE IT. It's derogatory, it's hate speech and it's a horrible thing to say to someone.

These two are just too big to talk about here but they are on the list. It's good to do the research and find out what works for your family/child.

inclusion vs. special education


vaccinations




There is something I want to state here, something that has bothered me about the DS community. You see for moms that don't like certain ideas/therapies/theories. . . they keep the information away from other moms. For the first 3 years of Seth's life I followed online communities and did what they said was "right" to do with my child. I followed their lead because they knew better right? Well through some great connections I found different ways of doing things, different theories and choices to make for Seth that will help him along. I'm angry, angry that a group of parents that I trusted decided that information wasn't good enough for me to have. No instead I had to scour the Internet searching for this stuff, stuff that could possibly enrich my child's life. I get to make the choices about my child's life and what I choose to use. Information should be available and given freely, even if you don't agree with it.

Let's be honest here. There isn't much research done on Down Syndrome. The funding is all put into Autism these days and I get it, I do, but a lot of these theories don't have scientific evidence, they don't have studies done that prove them 100%. Well you know what? That doesn't matter to me. As a mom if I don't try everything, do everything to make Seth's life better, to give him all of the tools he needs to survive, then I'm not doing a very good job am I? So I am going to try new things with him, I will pursue and find all of the hidden research on the Internet and I will be that mom who doesn't follow that pack. Not anymore.

Sunday, October 2, 2011

Ouch, physical ickiness . . .

So I feel sort of foolish, kind of of silly for saying this . . . I had a gastritis induced panic attack. I was so physically ill that my anxiety shot through the roof and I completely lost it. Add that to the four year anniversary of my brothers death and boom - you are adding fuel to the fire baby. And while I may say that I'm not permanently an anxious person or prone to panic attacks, it's still good to acknowledge my feelings and possibly seek help and go talk to someone. Therapy might be good for me. My life so far has had many complications and I'm sure I could do with a good objective person to talk to it all about.

Gastritis. . . I've heard of it before I'm sure, but damn does it hurt. It feels like the infernos of all nine levels of hell are in your belly. You wake up every morning nauseous, can't eat, can't drink, can't sleep properly - it's a living version of hell. I lost 14 pounds in two weeks. It's the best diet I never wanted. There's also all sorts of gas coming out of both ends . . . sorry about the TMI graphic nature of this post but there it is . . . all laid out for you.

I had an endoscopy and the doctor told me it was mild gastritis. If this is mild I feel for the severe cases. I personally feel like I'm dying. It is getting better though.

So I haven't eaten much in the past two weeks . . . I've been surviving on rice and soup . . . bbbbllleeegggghhh. But I was just in the kitchen, just looking at my pantry and icebox (yeah I'm old school like that, I call it an icebox) and I realized, I have a lot of changes to make. Tons of them. I'm 28 years old and at the beginning of this gastritis I was a whopping 221lbs, I'm 207 today. And you know what? I'm too young to weigh this much, hell no one should weigh this much. And I'm sick of being nice to myself and telling myself that it's food and food is good. NO. Food is for nutrition, not for happiness, not for sadness, not for coping and not simply for pleasure. We eat to live and I need to start following that.

No more coffee, soda, chips, candy, fried food, fast food, tons of cheese or dairy, that shit has got to stop. No more late night binge sessions while watching our favorite show (Drew and I love having nachos and cheese during Doctor Who).

So I've had a clean diet for the last two weeks of none of this crap and I'm not going back. I can't go back. I need to be healthy. Part of the reason I think I feel better is the fact that I'm taking it easy on my stomach and taking probiotics.

This is not supposed to be a super healthy happy person post. Believe me I am NOT super healthy. My idea of a nutritious breakfast is egg and cheese on a NY bagel with a Pepsi on the side. And that was on the days that I actually chose to eat breakfast, most days I didn't choose to eat until one in the afternoon. My idea of exercise is taking a walk to the store. I don't do exercise well. I've always hated it, I've always been a big girl and I've always been proud of that fact.

Well I'm not anymore. I'm kinda disgusted by myself at this moment in time. I chose to put poisonous shit in my body and now by body told me to go fuck myself. Yep that's exactly what it told me. I've dealt with heartburn and acid reflux issues for years, had my gallbladder removed and you would think that would be enough to wake me up and say "hey don't eat that" but it didn't. And here I am. 28 and suffering on my couch curled into the fetal position because of gastritis. I caught it right before it turned into an ulcer.

I will never be a size 2 model, my body isn't made that way, but I will be the healthiest that I can possibly be. Weight loss isn't the goal, it's the side effects of this process. Getting rid of all that shit will be like giving my body a big emotional hug. I've taken advantage of it for so long, treated it poorly and it hasn't worked out well for me. I owe a huge apology to my body. As I've said before, I'm not super religious but God gave me this body and I've ruined it, the good thing is, I'm still young enough to fix it.

Friday, September 23, 2011

NYC Buddy Walk . . . thoughts

Tomorrow is the NYC Buddy Walk, it's our second year going. Seth will be four in December and yet it's only our second year going. Why didn't we go the first two years? Why did we choose to sit out on something that directly impacts our sons life?

It's a hard question to answer. Here's the lie I probably told too many people to count - he had croup. Which is true, Seth has had croup more times than I can count and he might have had it then. But the real truth is I was scared.

You see the Buddy Walk would put me in a position to confront my biggest fears about Seth's future. Because not only would there be the cute infants and toddlers there with DS, as there are on all of the message boards I'm a part of, there would be adults with DS as well. And that's what scared me the most. Looking into their faces, talking with them, interacting and saying to myself "I don't want Seth to be like this when he grows up." Horrible for me to think but there it is. I didn't want the reality that Seth might not be as well functioning as an adult as I would like. That as a grown man his speech might be unintelligible or he may have problems understanding others cognitively.

We went last year, partially because Seth is big into Signing Times and loves Rachel Coleman and I thought it would be so damn cool for him to meet her. And it was really cool. Rachel Coleman is very sweet and fun and genuinely loves what she does and cares for the kids. I really enjoyed watching Seth watch her, he was fascinated and he loved every second of sitting for that show, in the 90 degree heat, sweating but with a huge smile on his face.

We didn't know anyone in real life last year who had a child with DS. We went solo, we went alone and we felt very much alone. All of these people were meeting up with friends and family, and there we were, just us three, walking along, not knowing what to do or where to go or what was expected. It was a little sad, but it was a road we walked together and we got through it like we always do.

The saddest moment though was when I was on line for food from this organic food cart. We were starving after the walk so we decided to purchase something to eat. Now there are many stands that you get raffle tickets for free snacks but this stand you had to pay out of pocket. There was a man with DS behind me and he asked me if this food cart took the raffle tickets and I told him that they did not. He looked confused and upset and left the line. Looking back I really wish I bought him lunch that day. I feel so bad that I just stood there, that I didn't do anything. Now I don't know if he was with someone or if he was hungry or his story at all, but I thought about Seth in about 20 or 30 years.

I thought about this the other day as well. Seth in his 30's, me in my 50's and 60's, would I still be able to take care of him if need be? Am I looking forward to taking care of him my whole adult life? What are the other options? Another thought was "will I outlive him?", what parent outlives their child? What kind of sad life would that lead to? So the fear of seeing adults with DS is very real, because this is not a short journey with Seth, it's a lifelong one, lifelong meaning that either I or he goes first back to God but I'm horribly frightened at either notion.

I also have to think that these adults didn't get the same therapies and care as our children with DS do today. There is so much more information out there, about therapy and medical problems, parents of children with DS have a lot of resources to help them. It wasn't like that fifty years ago. So I know in my heart that Seth has already gotten a better start than these adults did, and I hope that that is enough, I hope it makes him a happier adult later on in life.

Tomorrow I might be sad again, might have those twinges of moments that I wish I didn't see or fears for the future. But I do know what I absolutely will have, backup. You see this year we are not alone, this year we are going with two other wonderful families who have children with DS, this year we are bringing support. And it will be so much fun.

Seeing Rachel Coleman again is so worth it as well!!!

Saturday, September 17, 2011

The inevitable buildup of shit. . .

It's been a rough week. Really rough. I woke up Monday morning all hyped to send Seth on the bus to school, on that bus that meant I would yet again have a moment to myself to piss and eat and do other things in private and not constantly have a pair of toddler eyes and ears and hands on me at all times. Because as Moms we all crave that privacy, those little moments of "ahhhh peace at last".

But peace didn't come, not even close. I felt an overwhelming feeling of sadness, of loss, of grief and of terror. I wasn't in control. I didn't make every choice for Seth like I had in the past month. What if the school bus got into an accident? What if Seth didn't eat all day? What if they left him in his dirty diaper? What if he was crying and needed me? What if I got sick and I'm home all alone with no one to help??

What the hell was this feeling and why was I all of a sudden feeling it? What was going on? Was I going crazy? Had I finally reached a point that many of my other family members had before me? The large incidence of mental health problems in my family made me very wary and very scared.

Tuesday was even worse. Overwhelming nausea, couldn't eat or sleep, couldn't think straight-just racing thoughts and emotions and emotional outbursts. I was scared, I still am. Because on Tuesday I experienced my very first panic attack, at least the first one I could ever recall.

Panic attacks - when you are in a moment of pure terror, heart racing, hands shaking, can't move or think or speak and you are just stuck in this state. And Wednesday night I went to the emergency room because I couldn't handle it anymore, I couldn't handle feeling like this, this wasn't me, this wasn't Shanna, not at all.

The ER was nice, maybe too nice, they gave me a prescription for Xanax and sent me home, sent me home, the place I was most afraid to be because during the day I was all alone, alone with my thoughts, my feelings, my fears, my deepest darkest demons with no one there to help alleviate my pain or distract me.

Thursday I took said Xanax after waiting 20 minutes at my local pharmacy. They know me well because of all Seth's prescriptions and there I sat, feeling judged, because I had officially snapped, officially needed help, officially admitted that things weren't okay, that I wasn't Superwoman and that I was so desperately tired of trying to be so.

Xanax was bad, it was so bad. It didn't work for me, didn't do anything but make me feel worse and feel scared and really, really tired. So I slept a fitful sleep all day Thursday and prayed for when Drew's mom would come home so she could take Seth off the school bus and I could try to get some normal sleep. And I felt even worse so Thursday night I went to a different ER, perhaps one that would help more than the first did. And they did. They prescribed me an anti-nausea medicine and something called Atarax.

And so what is the point of this post?? I suppose to say that I'm human. In so many ways. And I'm so sick and tired of being strong, so sick and tired of having to deal with everything with a smile . . . so much so that my body gave me physical symptoms to tell me to chill the fuck out, to stop pretending, to let myself cry, to be not perfect and that yes it is okay to feel these things. It's okay.

My son has Down Syndrome and that's hard. Everyone this day and age has financial issues and that's hard. Relationships are hard. Dealing with family members is hard. Life is hard, it's messy, it doesn't yield sometimes. So I yielded.

And so what does this mean for me?? More time. Time for myself to just be, to just think, to do things that I enjoy doing, things that aren't cooking or cleaning or taking care of others. For four years I have spent every moment thinking of others and pushing myself to the side and I can't do it anymore, not physically nor mentally. I'm hurting. The Shanna inside of me is crying out for help and I have to listen to her, I have to support her and tell her it will all be okay. And I encourage everyone else out there who is reading this to do the same.

Because our children will be okay if we don't do therapy with them everyday or if they occasional eat fast food or take out for dinner so we can have a break from cooking. That they won't suffer if we put on a television show for them so we can read our favorite book or go on the Internet. That they still know that we love them, even when we aren't there. That maybe it's okay if they go to grandma's for the weekend and eat junk food and stay up late so we can have a date night. It's important that they have a happy and healthy mom and dad rather than one that does everything for them and gives them of a false sense of parental perfection. Parents aren't perfect and I'm not going to try to be anymore.

This is real and was really difficult to write about. One of my biggest fears is to have any problem with mental health mostly because I know so many people who deal with different issues, whether they are doing great or poorly. I don't want to be like that, I didn't want to accept that I might be.

But we all have our issues, perhaps I have more than most because "life ain't been no crystal stair" for me in the words of Langston Hughes. I've had my fair share of tacks and splinters and cracks that I've tripped up. But the thing is . . . I'm still going up . . . I've never stopped. I've never reached a landing and even looked down. And that's the problem, looking down. Because we can't forget about all of those stairs we've climbed, our legs still feel the strain of climbing them, are still weakened. If we don't stop and rest, we can never reach higher, never climb more stairs. It's time to take a seat at one of those landings and pause to wonder about all of them stairs down there.

Wednesday, September 7, 2011

September, shitty September

September is one of those months, a month that I would like to completely eradicate from the calendar, if only to forget the events that have changed my life, my family's life forever. And no this post has nothing to do with Down Syndrome and everything to do with family, my family, my family before I created my own with Drew and Seth.

Four years ago I found out Seth had Down Syndrome. A month later four years ago my brother took his own life. And he never got to meet Seth. And four years later I'm finally at a place where I'm alright enough with Seth's diagnosis and in my own life to actually feel the grief that I should have those years ago. You see things catch up to you, things that you don't let yourself feel because you just can't, because you have to be strong. And I had to be strong, strong for Seth, strong for me, strong for Drew and strong for my family. Because if I, as Seth's mother, was falling apart over his diagnosis how could I expect others to keep it all together. It's a facade that we put up, but it crumbles and it could take months or years but eventually that wall breaks down and we have to deal with the past that we pushed in the back of our minds.

My brother and I never got along. EVER. And I'm smiling while I type this because I suppose that that was our dynamic. Among six kids there are bound to be all sorts of alliances and enemies and nemesis' but my relationship with Chris was that of a non-relationship. We didn't hate each other, we just didn't like each other all that much. We were two very different people, worlds apart in our beliefs and lifestyles. And I never remembered having a decent conversation with him before I became pregnant.

One day, on the off chance that we happened to be together, he talked to me about my pregnancy (pre-diagnosis) and talked about getting Seth his first bike and cool clothes (my brother loved wearing nice clothes/sneakers). This is the stuff he did for our nephew and I always imagined it would be the same for his relationship with Seth, he would be the cool uncle that bought him the $100 sneakers. It was a great conversation, the first real conversation I have ever had with him. And for a moment in time and space we connected on a real level. I got to see the real Chris, the real man behind the clothing and the hair and the expensive clothes. It was a treat, a rare treat to see that side of him, rather than the hardened person that I was used (or not so used) to seeing.

I never told my brother about the diagnosis. I wasn't planning on telling him until Seth was born. Everyone else knew, all of my sisters and my other brother, why not this one?? Honestly I thought that Chris was vain and wouldn't take the news well and would say something hurtful. I also thought he wouldn't want Seth as his nephew if Seth had DS. So I never told him and he never found out. He never got the chance to meet Seth and he never knew about the Down Syndrome.

Or so I thought. My dad confided in me months later that he had told my brother about Seth having DS. I asked my dad to tell me his reply, no bullshit, I wanted the truth, I needed the truth. In all simplicity my brother had said "That's like the actor Corky from that show right?", my father replied "yes" and my brother said "that's not so bad". So there it was, acceptance. Perhaps it was that I thought my brother never accepted me or liked me, I sure as hell didn't accept him and his lifestyle, but I needed that knowledge, the knowledge that he would have loved Seth just as any other child. Because even though our relationship never was, I had hoped that he would have had a good relationship with Seth and after hearing that from my father, well I knew if he had lived Seth would have had a loving uncle and friend in him.

I'm not going to lie and make my brother out to be a saint, he was far from it. In fact it was part of the reason why we didn't get along. A lot of his life and doings was "unsavory" to me and I didn't agree with it. Deep down Chris loved his family and was a good person but I still have conflicting emotions about him. There's an ugly side to this story, one that I'm not really prepared to write about and maybe never will be.

This year I turned 28 and I cried. Because this was the year that I was officially older than my big brother. It sounds wrong. One should never live to be older than their bigger siblings, it's not the natural order of things. He was 27 when he passed, he would have been 31 this year. I felt like there was so much I gained in the four years since he passed, so much life to live and learn and grow and I couldn't imagine being 28 years old and not being on this Earth, not living the life I have. It made me feel sad and appreciative and guilty all at the same time.

And while I know we didn't have the best relationship, that we might not have had a relationship at all, I miss him still and I wish he were here. So here is to the shitty month of September, may it pass with few tears, less grief and heartache, until we are reminded again next year. Fuck you September.

Friday, August 26, 2011

A Cure for Down Syndrome . . . a mothers thoughts.

Many people have asked me what I would do if there were a cure for Down Syndrome. It's been the topic of many discussions on various message boards for parents of children with DS, it's something I've thought about . . . a lot.

Let me not even get started on my feelings that perhaps DS is not something that should/can be cured or the moral and ethical debates that have been going around. Let me just concentrate on this mythical world in which there was a cure for DS, would I give it to Seth?

In one simple word - no. And this might be the most selfish blog post I write to date but the answer is no. Why? Why wouldn't I want to cure my child of this "affliction", this thing that affects him cognitively, developmentally, and physically??? What is so wrong with me that I wouldn't want the best for my child?? I'll tell you why. . . in all honestly and all coming straight from my heart.

Before I do that though, there is something you should all know about Down Syndrome. Down Syndrome is genetic. Okay, here it goes, I am going to give you all a biology lesson. Genetic does not, does NOT, equal hereditary. There is a difference. Something that is genetic affects your genes and it CAN be hereditary (hereditary meaning it is passed on from parent to child), but it also may not be hereditary. So Down Syndrome is genetic because it affects our chromosomes, our genetic material, as in someone with DS has 47 chromosomes, an extra chromosome number 21, but most cases of DS are NOT hereditary. There is a form of DS that is hereditary but it is very rare. So next time you go to ask someone who has a child with DS if DS runs in the family, just don't. Don't do it. It makes you look ignorant.

Okay so what does Down Syndrome being genetic have anything to do with me not willing to give Seth a cure. Well think about it. Think about it hard. Our genetics, all those bits and pieces of information written on our chromosomes, they make up who we are from our hair color to our characteristics, basically our physical and spiritual beings are determined by our chromosomes. By spiritual I'm more talking about our personalities. Our chromosomes hold everything we are and can be.

I love Seth. I love everything he is. I love his big blue eyes, his dirty blond hair, his sense of humor, his laugh, his nose, the lines across his palms, his toes, the sound of his voice, I mean I love this person so much. And I see so much of me and Drew in him, I do. So how would I know, how do I know how much of his personality or physical characteristics are determined by the one extra chromosome?? That one chromosome has the ability to hold so much genetic material. What does it affect? If Seth didn't have DS would he have the same smile? Would he have blue eyes? Would he be Seth?? I don't know. It's not something I ready and willing to give up.

I don't find it right to change who Seth inherently is just to "cure" DS. I don't think Down Syndrome can be cured for this very reason in fact. How are they (meaning scientists) possibly going to extricate all of the genetic material that causes the "negative" aspects of DS while still leaving the same human being with the same personality and physical appearance?? And even if they can do all of that, isn't part of life and our character made up of all the struggles that we go through? I mean Seth is who he is also because of his life experiences, all the hard work that he puts in to learn and grow.

I guess the real question is, would Seth be Seth without Down Syndrome? And the answer is no. It just is.

And once I realized all of this, that I wouldn't ever give up Seth if it meant changing who he inherently is, I realized that I have fully accepted him, DS and all. Because while I may say that Seth has DS, that's not entirely true. Seth doesn't just have DS, it is a part of him, it is part of him that makes him who he is. I can't deny that. And in trying to deny that I've been denying all of who he is. He's Seth and he is made up of all that genetic material on all those chromosomes, all 47 of them.

And there's a saying that I have always had. Down Syndrome means 47 pieces to love instead of 46, isn't more love better?

I'm in love with all 47 pieces of my son.

Wednesday, August 24, 2011

A Taste of Victory

My victory to be clear. My very own personal success. I'm proud of Seth and all he has done but I think as moms we sometimes downplay our roles, our struggles and yes, even our successes, our little victories. So here is my not so little victory, something I've been working for, struggling for, for a very long time.

Last week I found out that I passed the last of three teaching certification exams. I did it. I passed them all, I did well, I can move on and do more with my life now, I can complete that part of me that says, "life isn't only about being a mom". And for those who know me, those who have known me, my biggest struggle with being a mom, especially one to a child that has special needs, is that I don't only want to be a mom, I don't want my whole world to revolve around this child, it's just not for me. Some women are fulfilled by motherhood, and in a way I am too, but not completely, not really. I need more, I want more. I love going out each day and working and learning and growing as my very own person, independent from our little family.

Okay so some of you are going to say "So what so you passed three silly tests, what of it?" Well no I didn't just pass three silly tests, don't you dare trivialize my moment here!! See when I found out I was pregnant with Seth I had one year left of college. One year. But when you are going to become a teacher that one year isn't just one year of classes, oh no it wouldn't be that simple for me, it's one year of classes and student teaching. A whole year of teaching which you do not get paid for in any way, shape or form. Your're lucky if your cooperating teacher is even nice to you and thanks you for the help at the end. So here was my day, everyday for a whole year with Seth.

6am : Wake up, get dressed. No shower, I always showered the night before, no time for showers in these mornings!
6:30: Wake Seth up, give him his Synthroid, get him dressed.
6:45: Pack a 25lb Seth in the Ergo baby carrier while I was wearing dress clothing and carrying a 10lb bag full of lesson plans and textbooks for my classes.
7am: First bus. Notice I said first.
7:20: Second bus, feed Seth a banana or something equally nutritional on the bus for breakfast. Feel lucky if I got a seat, otherwise all of this is happening standing up.
8am: Drop Seth off at my college Early Childhood Center.
8:05 Run across campus to catch the bus to the school that I was student teaching in.
8:40: Arrive at school and start teaching for the day.
12pm: On Mondays and Wednesdays I would rush back to campus for my class. It was a great class, really enjoyed it.
2:45: Pick Seth up from daycare.
4pm: Arrive home.
5pm: On Tuesdays and Thursdays I would rush back to campus for my night classes. Yes I said it, night classes. Not one, two of them.
10pm: Home again. Dinner.
11pm: Lesson plans.
12-1am: Homework, essays, journals, all that jazz.
1am: Pass out on the couch from exhaustion after taking a shower.

Sundays I had class as well for those naysayers who said I had the weekends free. WHAT WEEKENDS???? Oh and not just one class on Sunday, two. Two Sunday classes. Oh joy.

So there it is. I physically and mentally and emotionally wore myself out for a year. I never thought I could do it. I can't even tell you about the times that Seth got sick or we both caught pneumonia and Seth was hospitalized or the fact that we managed to do a sleep study and a bronchoscopy and still make it to all of his doctors appointments. It's all a blur. It really is. Add in all the therapies and holidays and . . . well it's not something I ever want to do again.

But the point is. . . I did it. I did. I carried a 25lb kid who still wasn't walking - my back protests now, it didn't then, I don't think I gave it a chance to, I would have probably sucked it up and still went on. The only time I faltered was the pneumonia, I called out for a week and rested up.

I couldn't tell you what my house looked like, what we ate, how I ever did laundry or went shopping or any other that. I truly don't know.

I know one thing though . . . I was victorious!!!!!!!!!!!

Sunday, August 21, 2011

It's here!!!!!

Well I don't really know if it is today, what day it happened exactly, but I do know that one day around this time four years ago, around the 20's of August, I found out Seth had Down Syndrome.

I can recall everything that happened from the moment that I got the phone call but I couldn't tell you what I was doing before it, couldn't tell you what I did that particular day. Was I happy that day? Was I thinking about getting the call? Was I thinking about Seth in a positive manner or was I depressed that he might have DS? No clue. I can't tell you what the exact date was either, I really wish I remembered but it all flew out the window in that one moment. I'm not the sort of person to write dates down, not the one to say that my son took his first step on this date (yeah I don't know that either for Seth) or that he crawled this date. I give roundabouts. Like Seth took his first steps around 18 months . . . that's the sort of person I am. The same goes for diagnosis day.

Well this post isn't to bring you down (pun!) about all of the negative shit I was feeling that day. It's actually somewhat the opposite. Why you ask? Was the diagnosis not depressing? Let me tell you it was the worse news I had ever gotten up until that point in my life (worse news came later but that is another post entirely). It was devastating. But that episode of my life is over. It's done with. For three years after that diagnosis I was saddened around diagnosis day. I'm not there this year. This year I'm at peace, this year we hit normal. We found our stride as a family, our little family that has struggled so much has found happiness. We are happy. We are many other things . . . but mostly we are happy.

Do you know those moments in your life where you either man up or are reduced to rubble? Those moments that change the very fabric of who you are and what your life is? Diagnosis day was that moment for me. It became a declaration of the type of person I am, the type of mom I was going to be, the type of woman that I wanted to be. I'm not going to lie, I was weak, the thought of termination crossed my mind, it did. I'm not going to be saintly here and say that termination wasn't an option, it was. Deep down inside I couldn't though, because I did my research and I knew that DS wasn't a death sentence, that it came with it's downs (ha I love that pun for some reason!) but it had so many ups as well.

So I became that person, that mom, the mom that said "Yes I'm going to have you and I'm going to fight for you and I'm going to love you . . . . no matter what." Fuck the DS, fuck the doctors, fuck the ignorant family members, fuck the insensitive friends . . . welcome Seth. Welcome to our family, just the three of us. And I knew, I knew from that moment onward that while we weren't the most perfect family and while there would be obstacles, we had each other. Just the three of us.

So what type of woman was I? Scared, excited to meet Seth, worried, fearful, determined, ignorant.

What type of woman did I want to be? Strong . . . that about sums it up. I wanted to be someone who didn't crack under the pressure, who pushed the tears away and dug out the smiles, who lived life in a shell of protection.

What type of person am I today? Knowledgeable. Strength is overrated sometimes. I do know that a lot of people tell me that I'm strong because I'm Seth's mother, I don't think so. I just think I'm more informed. I do the best for him because I'm knowledgeable about it. I know all about the therapies, all about the medical issues, everything I need to know to help Seth grow and learn and develop into a wonderful man someday. If I don't know something I look it up or ask a friend or post on a message board . . . I find that answer. Knowledge is power in my world.

I was strong for a while . . . or so I pretended to be. Because let's face it . . . no one is that strong. We are all made of flesh and bone and my heart breaks just as easily as yours does. My smiles falter, the walls fall down in a rush of tears and I'm left being no stronger than the next person. So I let the tears fall when they need to and I smile real smiles when I'm happy. I let myself feel . . . that's the most important part of this whole process, learning that I can't control my feelings, but that I have to let myself feel what I need to feel.

Sadness has become fleeting nowadays because there is so much Seth has done, is doing and will be doing in the future. There is so much hope. There is so much laughter. There are so many smiles and "I love yous" and sticky kisses and squeezing hugs. I love it. I love our little family.

Happy Diagnosis Day Seth!!! Here is what Seth can do:

sign over 100 words!!!
eat with a fork and spoon with little spillage!!
drink out of an open cup!!!
blow bubbles!!!!
verbalize about 50 words!!!!
run!!!
jump!!!
throw a ball!!!
help put his shirt on!!!!!
stack 7 blocks!!!
finish a 3 piece puzzle!!!
wash his hair and body!!
name all of his body parts!!!
help mommy vacuum the rug!!
put his toys away (sometimes)!!!!
swing on a big boy swing at the park!!!!

These are some of Seth's favorite things:

music
dancing
singing
Signing Times
coloring (favorite color is purple)
kisses
hugs
monkeys
crackers
rice
icecream
Fresh Beat Band

He truly is an awesome person. He's our little buddy. We love him and we hope you love him too!

Monday, August 15, 2011

The Ipad

Such a simple title. The Ipad. Sounds epic. Yeah I'm a geek, the word epic means a lot to me. So I conveniently forgot to add the Ipad to my list of Mommy must haves. Why? For one it's not a must have, it's just a really "I want that so bad and it's so cool and my child will benefit from it" have.

So why the Ipad? Where did I hear about it? Why did I get one for Seth? Well last year around this time Seth's OT (Occupation Therapist) got an Ipad for her birthday. She decided to download some kid apps for her child for when he was bored in the car or at the doctors office. Then one day she brought it to my house for therapy for Seth. And we were never the same.

How did Seth respond to the Ipad? He responded like it was the greatest thing in the world. He looked at it like it was so cool and he was able to use it because he just had to touch it. And what kid doesn't know how to touch valuable, expensive breakables???? Kids are masters at doing that!! So am I - I'm quite the klutz. I break plastic for goodness sake.

So here is the first app Seth ever used on the amazing day last year when we saw that he loved the Ipad, sitting with his therapist so quietly. It's this one: http://duckduckmoosedesign.com/educational-iphone-itouch-apps-for-kids/fish-school

Fish School - such a cute app. Really it is. I mean the fish form letters and numbers and then they sing the ABC's and they form shapes as well. Then you could play this awesome matching game (not that I've played with it....ok I have - so much fun!!!) and so much more. In fact all of the apps by the developer DuckDuckMoose are absolutely amazing and awesome and I can't think of another "a" adjective to make that flow more smoothly. It's just good fun and kids learn from them.

So what therapeutic value does the Ipad have for kids with special needs? Well to be truthful I know and you know that I love my son but his fine motor skills suck (sorry buddy). Seth's fine motor skills are horrible. It took him forever to clap his hands, to point at things, to use pop beads, to thread a bead, to color, to eat using utensils . . . you get the point. It's one area that Seth really needed the extra help in. And the Ipad is great for fine motor skills. Most of the items that have to be touched need to be touched with a pointer finger or touched and then dragged, this works on the fine motor muscles/skill. Some apps require more than one finger to be used, or you can use lots of fingers all over the screen at a time. It's cool.

Another therapeutic use is for kids who are nonverbal or who may never become verbal. We all don't want to think of that but there are kids with DS or Autism and other special needs that never become verbal. Well instead of a bulky communication device, there are many apps on the Ipad that a child can touch a finger on the picture of what they want or can even go through many different pictures to make a sentence to express what they want. The up side to this is that an Ipad is more socially acceptable than those big clunky machines that they use for communication devices. Lots of people have Ipads and lots of kids use them now. So there is no social stigma if your kid is using the Ipad in public.

One of these apps for communication is Proloquo2Go. In fact during my research of apps this seems to be the best app for communication. Here is their website: http://www.proloquo2go.com/. It is an extremely pricey app and the Ipad itself is pricey but here is the thing . . . if your kid is nonverbal and needs an Ipad and communication apps, well many schools and EI and other places are providing Ipads for kids with special needs. Google and search for what's in your area, to see what you can do for your kid. It never hurts to try.

How does the Ipad make my life easier?? The biggest way the Ipad has made my life easier is for doctors appointments. Anyone who has a child with special needs understands how many different doctors we go to at any given time of year. Also how many ER trips or hospital stays . . there is only so much television and so many books and toys and snacks before kids get bored. That's when you break out the Ipad. In fact when we are in the waiting room at the doctors office and have the Ipad out there is a circle of kids surrounding us. Kids love it. They gravitate towards the Ipad. It also makes Seth the cool kid while he shows off his Ipad skills.

So now here comes the fun part, my list of apps, apps that I love, well that I love for Seth. Screw it I love them too!! I do, I play with Seth's apps, they are fun!! When we first bought the Ipad for Seth my SO and I used to fight over the Ipad when Seth went to bed. We learned to take turns . . . eventually. The first few are from DuckDuckMoose.


Fish School
Musical Me!
Old MacDonald
Wheels on the Bus
Itsy Bitsy Spider
Baa Baa Black Sheep
Park Math
Word Wagon
Tap Tap Baby
KidsSongs
First Words Deluxe
FoodFight
KittytheCat
My Very First App
Peepers I say you say
Learn to Talk
Danny the Dragon
Dem Bones
Signing Times apps- there are two
Peeka Ocean
Juno Music
Interactive Alphabet
Verbs With Milo
The ABC Song
Tap To Talk
Artik Pix
In My Dreams
IWriteWords
Doodle Buddy
ABA Flash Cards- ok there are a lot of them and they are all free- love these!!!

There are tons more. . . you have to do your research and see what you think will catch your child's interest. We have sign language apps since Seth loves ASL, we have free fireworks apps that Seth likes to just touch and watch the fireworks go off . . . there are tons of free apps out there for kids and for adults.

So I'm not telling you to buy an Ipad or to get all of these apps, I'm just telling you how the Ipad worked for us and our lives. It helps us, it helps Seth and he loves it. And I love it too. I love my Ipad, I'm on it now, while I'm on the main computer typing this post. I'm playing Escape from Monkey Island on it. . . good fun!!!!

Wednesday, August 10, 2011

Oral Motor Therapy

So sorry about not having blogged for a bit. I've had back pain, the stomach flu and Seth is blessed with a cold that leaves snot trails down his nose. Yeah it's like that in my house right now. It's like a diseased, festering wound. Where is the fuckin Lysol in this place???

Warning this is a very long post, very interesting, very educational, very necessary, but very long.

Okay so on to my topic, oral motor therapy. In my very own biased opinion oral motor therapy is the most important therapy along with speech and feeding therapy for children with Down Syndrome. Why? Well the first time you meet someone you assess them. You assess how they look by what they are wearing, their hairstyle, their weight, their gender, their race . . . yes I hate that we do it but we all do. We see with our eyes first. The thing is I have control (for the most part) over what I look like. I can dress nicely, fix my hair up, wear some makeup . . you get the point.

Then comes speech. You judge a persons intelligence on what comes out of their mouth. You just do. Imagine meeting a very nicely dressed adult and not understanding a word that comes out of their mouth. Or they curse a lot. (Sort of like me) Or they use slang or speak Ebonics . . . you get the point. Your impression of that nicely dressed person changes.

Well I want Seth to be able to give people a great first impression. I always dress him in clean, nice clothing and his hair is always presentable, he is never dirty. I think that stereo typically people think children with special needs are not attractive or are unkempt and I want to dismantle that idea. Seth is a very handsome child and I always try to have him looking his best.

Speech is a crucial part of our lives, Seth can't use sign language forever. So it all starts with oral motor therapy. What is oral motor therapy? What does it consist of? How does speech work? These are all very important questions to ask when thinking about speech development.

Oral motor therapy: The use of specialized exercises designed to improve and maintain the strength and coordination of the tongue, lip and jaw muscles. (Yes I shamelessly copied that from another website because it succinctly defined oral motor therapy.)

What kinds of oral motor therapy are there? What does it consist of?

Chewy Tubes:

Chewy tubes work on the jaw muscles. The TalkTools chewy tubes come in a set of four, in differing hardness levels ranging from soft to hard. The basic premise is that you have your child start with the easiest chewy tube (TalkTools yellow I believe) and try to have your child chew down on it ten times on each side of the mouth. Only use the softest one until your child masters it, meaning your child can do three reps of ten times on each side of the mouth. Yes this will take a while but it's all about building that jaw strength. You then move on to the next color/hardness level but you do not stop using the first one, you do ten chews on each side of the first one, then continue on with the next, once your child masters the next you add the other in the cycle. When your child masters them all they may be given them just to chew on randomly. Seth loves to chew on them randomly still to this day. (Yes he mastered them!!)

Ways to get your child to use chewy tubes: Yeah it's hard to make our children chew, well any child, if they don't want to. My solution? PEANUT BUTTER!!! Seth loves food and peanut butter on those damn chewy tubes works!! Pick something your child likes, something sticky or gooey. Shit we used Nutella as well. Fuck it. . anything that works. Food is a bribe in my house for therapy reasons. How do you think we got him to sign "more"? (Cookies!!) LOL.

Nuk Brush

This is a Nuk Brush:


It looks like a baby toothbrush. It's a brush for the inside of the mouth. I started young with Seth, about 6 months old, I can't really remember. I still have them, they are available on Ebay and other places and are relatively cheap. So what do you do with this thing?? You brush. All along the inside of their mouths. In Seth's younger days he loved this!! Why? TEETHING!! It felt good, he even used it on himself. Brushing does two things, two really important things. First it stimulates the muscles on the inside of the mouth like the inside cheek and it the inside parts by the lips. Secondly it is a prevention against oral aversion. A child that is exposed to massage and having someone/something inside of their mouth is less likely to have an aversion. A lot of kids with DS have oral aversion and can't stand having their mouths touched or eat different textures. We never had this problem with Seth and we were religious about brushing. We brushed the inside of his mouth 3x/day before the chewy tubes and then he would eat his meal.

So it went Nuk brush, chewy tubes, meal. There's a method to this madness. The Nuk brush was a more gentle way to get into his mouth, kind of preparing his mouth for the chewing, waking his mouth up. Then the chewy tubes to work on his chewing. Then he would eat and work more on chewing and he would have the best tone of the day because we just did the exercises so he was eating/chewing better and was more able to try new/different textures of food.


Straws/straw cups

Seth started drinking from a straw at 10 months old. Why is a straw so important?? Well quite a few reasons. Can you stick out your tongue when drinking from a straw?? Try it. Do it now. No you can't. So it helps with our kiddos tongue thrust because the tongue is forced back when straw drinking. Look at yourself in a mirror when drinking from a straw. How are your lips shaped?? Your lips do a lot of work drinking out of straw. They have to form a seal around the straw so that no liquid can escape. How about sucking? You have to suck on a straw to get the liquid right? This helps our kiddos sucking reflex. Look at your cheek muscles when you suck on a straw? What are they doing?? They are doing a lot of work.

Straw drinking is like an instant oral motor exercise for our kids. It works so many muscles. Plus do your really want to have the 3 year old with the big bottle of juice?? No. No one does. Seth didn't master the straw until 13 months old but I've seen younger kids master it much earlier. Throw out those bottles. . . do it. It's a great change. And you know what? Straws are so convenient. I just buy a bottle of juice at the store and stick a straw in it. No special cups (I do have straw cups for Seth at home) but out and about all I do is throw some straws in my bag or a juice-box. It makes life easier.

Facial massage

Yeah it doesn't get more straightforward than this. It's simple. Facial massage. Massage your child's face a couple of times a day. They love it. Children love to be touched and massaged and held and it's just a great way to bond with your child. Yeah it's a bit weird in the beginning but you will get used to and so will your child. It's the cheapest too because your hands don't cost a damn thing. But there is a method to the madness. Start at the tops of the cheeks and massage down towards the mouth. Massage at the top of the sides of the nose down towards the mouth. Massage the upper lip down towards the mouth. You see a pattern here right?? Massage towards the mouth. When massaging by the chin massage up . . . towards the mouth. All the massage goes towards the mouth. Ok I think you all got that now. I did the massage before the Nuk brush. If it seems like way too much for your child, and it is in the beginning, do it at other random times during the day.

Fun oral motor tools:

Vibrating teethers

We had this one:

Kids love to chew on it and it vibrates so it works for jaw strength and to stimulate the inside of the mouth. Good job whomever invented this thing!! And they are cheap. Cheap is always good for me. It's one of my mottos!

Bubbles

Now a lot of children aren't going to be able to blow bubbles to a bit older, Seth still struggles with this at 3 1/2, he is like 50/50 with bubble blowing. But who cares because he tries and he loves bubbles. It helps with the "O" lips as I call them. It also helps with lung capacity and inhaling and exhaling. It's great, it's cheap, it's fun and I don't know one child that doesn't just love bubbles.

Horns

There are some specialized horns made just for this, for oral motor therapy, screw them. Pick up a cheap recorder or horn from the dollar store, believe me they are going to chew them to heck and they will eventually be destroyed. Your child can practice sealing their lips around the end and blowing air into them. Same kind of concept as blowing bubbles except this is a bit easier. So it's a beginner oral motor tool.

Lollipops

Oh yea I went there. I brought out the candy. Lolipops . . why you may ask? Licking!! Tongue control!!! Chewing on the hard candy and trying their best to get some of it. It works!! Mostly it's good for licking though!!! Is a lollipop going to kill your kid . . no . . . so get over it and give the damn kid a lollipop. It took me a while to process this one as well. I like these lollipops because I'm anal and always feel like my child might fall and choke on his lollipop:


And the little loop is also good because Seth now has a super human hold on his candy. It's almost impossible to pry out of his sticky, grubby hands!!

There is a great article on the Talk Tools website. It's called The Oral Motor Myths of Down Syndrome. Google it. First result.

Basically here is the run through. It's a long run through but it's totally worth reading.

Kids with Down Syndrome have a high palate. The thing the you hit with your tongue at the top of your mouth - that's your palate.

Kids with DS have larger tongues than typical kids.

Kids with DS are mouth breathers.

Kids with DS have tongue protrusion.

Kids with DS are prone to ear infections/hearing loss.


All of this issues, well people with DS aren't born with these issues. People with DS are born with one thing in common, besides the 47 chromosome thing. . . low muscle tone. And low muscle tone is the reason for each one of these problems and I'm going to tell you why, starting from the top of the list.

Kids with Down Syndrome have a high palate - well I learned that the palate actually forms around our tongue. If you have Down Syndrome and your tongue tends to stick out because of low tone and low ability to keep your mouth closed . . well your palate doesn't form correctly around the tongue. So now your mouth doesn't properly fit your tongue and your tongue sticks out. Good thing that the palate forms for a while, with oral motor therapy and keeping that tongue inside the palate can properly form and make room for that tongue. Boom we just knocked out the first two. So palate and tongue myths are done.

Kids with DS are mouth breathers. Well wouldn't you be too if your mouth was constantly open. Keep your mouth open and try to breath through your nose. Can you do it? I can't. Neither can your child with DS. So no they are not naturally mouth breathers, they become mouth breathers because of the low tone.

Kids with DS have tongue protrusion - we already solved that one with the whole palate issue.

Kids with DS are prone to ear infections and hearing loss. Ok the truth is going to hurt here because you can stop this from happening to your child. In fact you are probably the cause (unintentionally) of your child's ear infections. How does one feed a newborn? We lay them down in our arms and feed them, we don't think of doing it any other way. Well it's the wrong way for children with DS. WRONG I TELL YOU. Why? Well when we drink there is a little muscle in our ear that closes so fluid doesn't get in there. Swallow and see how your ears feel. If you have low muscle tone is that little muscle closing properly? Is fluid getting in?

The solution: Feed your child in an upright position where the ears are above the mouth at all times. Chronic ear infections lead to hearing loss. Some kids don't even have symptoms of fluid in the ear or ear infections or hearing loss. And how do we learn how to speak?? Through hearing. We learn how to speak through proper hearing of articulation of words and sounds, none of which is possible with fluid buildup in ears. Seth recently had ear tubes done, I didn't know that he had fluid in his ears until after the surgery. What happened a month after that surgery? A speech explosion. So much speech (I'm crying here). There is nothing like knowing that you possibly fucked up your child's speech by not knowing about an important medical issue. So get your child's ears checked out frequently!

There is more but you have to read the article.

Ok I'm done here. With all my heart I hope this post helps a couple of moms who are lost in the world of oral motor therapy. I know I was once, about 3 years back. I'm so glad I had knowledgeable people who were there for me, I hope I can be that for all of you.

Tuesday, August 2, 2011

Mommy must haves for children with Down Syndrome

I've often been asked what items/products I absolutely could not have lived without, what helped Seth progress/eat/drink/play/build muscle tone, etc. Basically what worked for us . . . and tons of shit that just didn't. We went through a lot of products to find those that were perfect for Seth, things that functioned for our lives and needs.

There are a lot of products that are universally great for DS in general because let's face it . . our kiddos have a lot of the same needs. So I will address these needs and products I used for our lives. If you have any questions about other products or if I leave something out . . . well just ask in the comments section.

Oh and just to clarify . . . cause I have to be a smartass about this . . . I'm not getting paid to endorse these products. . this is just to help other moms. These are products that we use/have used.

Bottles that are easy to use for kids with poor suck reflex:

As I wrote in the last post, Seth had tons of issues feeding. These bottles helped. Not only were the nipples good for him to latch on, the drop-ins aided in him not ingesting as much air and getting as. In fact Seth never had an issue with gas as an infant. There are different nipples with varying degrees of difficulty so you can upgrade as your child gets older. Also they don't require cleaning!!!! Drop-ins!!! Fuck it all . . .that itself is worth my money. Do you know how much time I saved not scrubbing bottles??? Do you know how easy it was to pre-make bottles with the drop-ins and just add water as needed. It's so easy to use. It made my life with a newborn so simple. As a first time mom I think that's worth it. Also the drop-ins are pretty cheap and you can buy the generic brand drop-ins because it's the same damn thing.

To help your very wobbly low tone child to sit up:

The Bumbo Seat!!!!


I loved this seat for Seth. We bought ours off Ebay for very cheap. Hello!! Buy used stuff on Ebay. We are not millionaires, we like Ebay, I think I live on Ebay some days. Craigslist is good too. Plus your child is not going to use it for that long anyways. Seth started neck/head control at around four/five months old. He didn't have the strength to hold up his big noggin that long and this chair REALLY helped. It was great when we started rice cereal too. Seth was too small for a highchair and we wanted something on the ground for safety reasons. So the Bumbo seat is awesome. Oh and get the tray with it. It's worth it!!

To increase oral motor skills:

CHEWY TUBES

Ok I'm going to say it and say that I'm probably a chewy tubes snob. There are tons of websites selling these now but I'd go with TalkTools. Pricey . . yes . . worth it . . HELL YES. So our kiddos have trouble with oral motor skills because of low muscle tone. These chewy tubes build oral motor tone/skills and feeding skills by teaching them to chew. It will improve mouth closure, it will improve speech. It makes a difference. That's it tomorrow I'm going to write a whole post about oral motor therapy because it is, IMO, the single most important thing you can do for your child with DS. But believe me, you want these chewy tubes. That and the honey bear straw cup to start straw drinking. More on straw drinking tomorrow. Please visit the Talk Tools website and read their articles. Sarah Rosenfield Johnson is amazing and her program works. (Ok now I sound like an infomercial-sorry!)

For language/sign language

SIGNING TIMES


Ok so everyone knows I love Rachel Coleman. If you are going to do sign language with your child, Down Syndrome or not, this is the way to do it. She sings and signs and teaches them so easily that I learned from her. I now know over 200 signs, can sign the alphabet, about ten of her songs and can count to ten . . . all in sign language. Seth is 3 1/2 and can sign over 100 words, strings signs and words together and can sign the alphabet. He is currently working on signing his numbers as well.

Seth's biggest area of struggle is language, speech in particular. He understands everything that is said to him but he can't always let us know that. Sign language gave him a way to talk to us when words weren't coming. It's emotional for me because every mother wants to hear their child speak but that isn't always possible. (teary-eyed at my comp now!) Signing Times was/is a great tool. Seth loves all of the DVD's. I'm not a huge fan of the Baby Signing Times ones, we stick with the regular ones. Now I know not every mom of a child with DS does sign language, it's a choice. I'm not advocating that you do or don't - that's your choice and dependent on your child's needs. But if you do . . go for Rachel Coleman.

Oh and we got to meet her at the NYC Buddy Walk last year and are seeing her again this year!!! Here's a pic:


That picture is awesome. Ok moving on. . .

Sensory Balls (sounds a bit dirty!)

They are fun, they are cheap, they provide tactile sensation for our kiddos. I love them!! Plus one of Seth's favorite things are balls. These are all easier to grasp. They provide great sensory input for kids that need it. I think I will do a post about sensory input as well. Oh so much to say and so little space to say it . . .

Rifton Chair


Now I know what you are thinking . . it's pricey and it looks strange. This is a Rifton toddler chair. We got ours through EI because Seth needed it for feeding. Tomorrow I will write more about the whole oral motor thing but basically to work on oral motor skills our kids need to be in a supportive chair that holds them up. This is the chair that works for us. Something like this that can strap on to a regular kitchen chair, something with a seat-belt and a footrest for your child, that will work as well. If you can, like me, try to get EI to pay for it. Remember again, we aren't millionaires, just regular parents who have kids that need special things.

A rocker/rocking chair or horse or something to that extent. Here is what we have:

It's from Ikea, it's $10, and I know it looks weird but Seth LOVES it. It provides vestibular sensory input. Ok my computer is telling me vestibular isn't a word but it is. Damn that red line under the word. Vestibular input is gained through stuff like swinging or rocking or spinning, basically anything that has to do with moving the head/inner ear/visual and auditory. I feel like I'm explaining it poorly but I can't exactly put it into words.

So Seth, I noticed, craves vestibular sensation. That's the type of child he is. We had some issues with him rocking/head banging and I used to hold him and rock him but I needed something better. This little rocking thing is it. He can go on it, rock and he loves it. It's healthy. It's much better than having that child that head bangs and rocks back and forth all day. There is no way to derail certain behaviors but I try to find more socially acceptable ways for Seth to get what the sensory input he craves.

A good, sturdy straw cup with replaceable straws:


We use these cups from Munchkin. I love them. The leak a little but overall they are very good. They have a valve which makes Seth work his oral muscles to get the drink which is good for oral motor therapy. They also have replaceable straws. No more buying 30093458 cups. Seth chews through straws, clean through. He's the straw chewing kid. I guess it feels good with all those chompers he has in his mouth. So I like the fact that I can replace chewed straws or even straws from the cups that rolled under the couch and now have about 5 days of milk buildup that is impossible to clean. (ewww I know but it has happened, I'm so real here it's scary) No worries - new straws!!!

A good wooden push toy for walking skills/support:

We used this one from Melissa and Doug. I love Melissa and Doug toys but they are pricey. Again I'll reiterate . . EBAY. Love Ebay so much. So we purchased this off Ebay. We used it inside and outside on concrete. It's seen a lot of time but it's still doing good. In fact we are giving it away to a friend in need. . . sorry Jennifer I forgot to bring it to your house again!! Next time! Another little boy will get the chance to use this great toy. It's so fun. The alligators open and close their mouths as you push it . . . ok so I like kiddy toys . . I'm allowed to. I also like Seth's building blocks, so much fun!!!

Ok So this post is getting long and there are more products but these have really helped. I'm going to talk about one more thing, something that every parent for every child all around the world should have for their child: a library filled with age appropriate books. I think we forget how important reading is for children. Read to your child. One book a day, two books, it only takes about ten minutes. It's great for kids to hear/see their parents read. Kids want to emulate their parents, give them a good example to follow. I'm a reader by nature, my degree is in Secondary English Education so I'm a bit biased. I love to read. I know not everyone likes to read, not everyone is me. There are millions of books out there, graphic novels, even books on electronic devices. Find something you like to read and share it with your children.

Saturday, July 30, 2011

D-day questions continued!

Was there anything you would change...I mean is there anything you wish you hadn't worried about, or stressed over...Something you thought was a big deal back then, but now looking back you wish you hadn't obsessed about??


Copied from Jenny's comment on my last post.

Honestly since I did have a prenatal diagnosis I wish I enjoyed my pregnancy more. I know that I felt like I had to go into research mode and find out everything about DS, but I wish I just took it easy. Seth is my only child, possibly will be my only child forever. I may never have another pregnancy. I miss the way he felt when he moved around, miss talking to him. I really miss when he used to get the hiccups inside of me (fetal hiccups, how cool is that!) and you could see my belly jiggle around in one spot. It was a truly amazing feeling.

When I was pregnant I was obsessed with how Seth would look. I was afraid that he would look . . . I don't know how to say it nicely, but frankly I didn't want him to look "retarded". Yeah that sounds horrible but there it is. I didn't want him to have a big sign on his face that says "I have Down Syndrome". I had nightmares for months about what he would look like. One very memorable nightmare was that he was born and he looked like a stereotypical Martian with the big eyes. It was a scary, scary dream. Obviously my son is a very handsome little boy and I wish I hadn't wasted time/energy worrying about that. I wish I weren't that vain, but I was. It was a huge deal to me. I think that the first time you are pregnant it's supposed to be this magical thing, your child is supposed to come out and be perfect and I had knowledge before giving birth that my child wasn't going to be perfect, that he may come out looking different than typical newborns.

Sometimes it almost made me wish I never had an amnio at all. For me that wasn't an option, knowledge is a sort of crutch I use when I'm going into unfamiliar territory. I arm myself with all of the facts and use that to ease my worries. This fear, this worrying about Seth not looking like a handsome little boy, well the facts didn't help alleviate that fear. Nothing did. There was one thing that helped me through it though, one thing that made me see that children with DS are beautiful. That was going to a DS message board and looking through all of the wonderful pictures of the children. I saw children, all with DS, of different shapes, sizes, eye colors, hair colors, and all of them were beautiful/handsome. And when I met my Seth, I thought he was too.


Friday, July 29, 2011

Diagnosis Day Reflections

D-day is coming up in about a month. Diagnosis day anniversary. The first two years I let it slip by without notice, maybe I wasn't ready to notice or to relive those feelings, last year I acknowledged it somewhat, this year it's different. I feel like this year I'm actually going to celebrate diagnosis day.

So to help prepare for the D-day post I've thought of something interesting to do here on my blog. I'm going to one by one answer the many interesting questions I have been asked about my whole DS journey/experience/knowledge. I think it can be very helpful to other moms of children with DS, it can be enlightening to those who know nothing about DS and it can be emotionally healthy for me to do it. So onto question #1 (Oh feel free to leave questions in the comments if you want those answered as well!!) And feel free to answer the questions if you do have a child with DS.

This first question is inspired from Rachel Coleman's blog post Unanticipated Milestones which can be found here http://www.rachelcoleman.com/2011/04/19/unanticipated-milestones/.

What were the most unanticipated milestones having a child with DS?

There are quite a few of these unanticipated milestones, things that I never thought I would celebrate but I have just because they meant so much to me, Drew and Seth. One of them was when Seth was able to eat a 2oz bottle in one sitting.

Yeah I know what child doesn't scarf down a 2oz bottle? Well there was a time, 3 years ago, when Seth didn't/couldn't. The doctors were so afraid of him not gaining weight that we were ordered to feed him 2oz every 2 hours, round the clock. Seth would not latch on, would not wake up, would not suck, would not eat, and it killed me. It took 45 minutes for one feeding and that was usually only about 1oz. Eventually Seth's muscle tone got better, he grew stronger, and then one day, out of the blue it seems, he ate his whole bottle. Eventually a 2oz bottle grew to 4oz, then to 8oz and now he is drinking out of 10oz straw cups, downing his drink and asking for more.

I would like to think I would never forget about how hard it was, how hard we worked, but when things become easier you do forget. I forgot that food was a struggle at all with Seth. It was the biggest struggle teaching him to chew and having him eat solids and then table foods. I forgot. Perhaps my reward is that last night I was able to give Seth a slice of pizza, apple pieces and his milk and sit down and enjoy eating dinner with him, versus feeding him. It's a cool thing.

Another unanticipated milestone is sign language. When I was pregnant I did a lot of research about DS but not much on sign language. Sign language came into the picture a bit later, when Seth was about 6 months old. His speech therapist started using basic signs with him, so we backed it up and started teaching him more signs and it sort of escalated from there. At 13 months Seth signed his first word "more". It would be "more". My kid wants more of everything. From then on Seth realized that signs got him what he wanted, so he used them frequently.

The most important sign that I think Seth has ever used is the sign for "I love you". Seth would repeatedly reciprocate the sign if we signed to him but never did it unprompted. One night upon putting Seth to bed, he looked up at me, smiled, and signed "I love you". And I cried and smiled. And I let him stay up late that night because that's probably the reason he signed it in the first place. He's a charmer! Seth signs "I love you" all the time to me and other people unprompted. It's still so special to me though every time he does it. I see other parents take advantage of the fact that their children can say "I love you". Not me, not with my child. I cherish every word that comes out of his mouth or comes from his hands.

Monday, July 25, 2011

Dear Jehovah God,

I was raised a portion of my life as a Jehovah's Witness and part of that upbringing was being told the importance of God's name. Jehovah. It sounded like when I was praying I was talking to him directly, not some "God" that everyone else had, but my very own personal God. No one else I knew called him Jehovah, it made Him my own, special friend. And I needed Him during my childhood, needed Him growing up, but as I got older I needed Him less and less. I would like to think it's because He has guided me to where/who I'm supposed to be in life.

I know I've been lax in the prayer department, I know I haven't sought your help when I should have, I know I haven't put all of my struggles on your shoulders like you ask us to do. I know I haven't had a conversation with you for a very long time, at least not one that doesn't involve blame and hate and not understanding on my part. So for once in my life God, here's a prayer that isn't asking for anything.

Dear Jehovah God,

I would like to thank you first and foremost for strength, the strength I have everyday to get up and live another day happy and healthy and safe. I would like to thank you for having food in my refrigerator, clothes on my back, a bed to sleep in, a roof over my head and family to love. I have heat in the winter and air conditioning in the summer. I have legs to walk with and arms to hug with.I have access to medical help for me and my son when we are sick and need it. I have friends with good listening ears and love in their hearts.

Onto the not so basics. Seth has more toys and DVD's then he can ever want or need. I have books to read and video games to play. I have a clean backyard to sit and enjoy the sun, rain or snow. I had a free college education and the chance to become a teacher and I want you to know that I'm taking advantage of that and that I'm doing it. I am. I'm going to be a teacher, thanks to you. I have a spouse that loves me for who I am and is my partner and best friend in life. He's a great person. He's amazing. He makes me laugh and smile and we have great conversations.

You gave me parents, while not perfect, realized that education was the most important thing and pushed their children to succeed where they could not. You gave my mom the strength to go to college at 50 years old and accomplish amazing things. I have three great sisters (yeah we have our issues) and two brothers whom I love very much. I have a handsome nephew and a slew of cousins and aunts and uncles. I have support and I have love. I have a Down Syndrome family online full of men and women who are there to hold my hand through a difficult time in my life. I thank you for them.

I really want to thank you for Seth. Because there are places in this world where my child, a child with Down Syndrome are thrown away without hope or love or food or any basic necessities. And here we are, here Seth is, able to thrive and learn and grow, all because we have the means to. I often think about this Jehovah, I often think about what would have happened if Seth was born to any family but ours, in any country but this. And I cry, partially out of sadness for all those kids who aren't given a chance, but also out of thankfulness that Seth has a chance in this life, to have a good life.

Seth's eyes shine when he smiles and laughs and looks at me. Jehovah I never thought I wanted to be a mom growing up, never thought I was quite mom material. Thank you for giving me the experience of being a mom. It's the best feeling ever. One person in this world who is such an intrinsic part of who you are, a being that you are forever connected with, there is nothing like that feeling. Nothing. I feel loved everyday by Seth and he has been my greatest teacher and another best friend. We laugh together, we discover together, we learn about the world while we hold hands and share thoughts. I feel an overwhelming sense of pride and accomplishment in being Seth's mom. I'm good at it. Thank you for giving me that.

Jehovah, I've been ungrateful lately. I'm sorry. I really am thankful for all I have in life. Thank you.

In Jesus' name I pray, Amen.

Thursday, July 21, 2011

All the beautiful people. . .

Yes it's a song by Marilyn Manson but my little post is about true beauty, one that radiates further than makeup, clothing, shoes, hair and all that jazz. My post is about the beauty inside that makes you a lovely person, regardless of what you look like.

Today I was prepared for a bad day. 3 1/2 year old Seth, very sick, going to the ENT in a waiting room full of rowdy children. I brought the stroller today, I KNEW what was coming for me. I came prepared with snacks and bribes and the Ipad . . . I pulled out the whole arsenal.

On our second hour in the waiting room another couple comes in with their child. My eyes lock on to him while theirs lock on Seth. We smile and greet each other like old friends. We've never met. In our hearts we have though.

The amazing thing about this Down Syndrome journey is that I am not alone. We are not alone ladies (and dads out there).

Back to the couple. They run over and this woman, a woman I didn't know, hugs my child. I mean the most honest, true, loving hug a person could give a child. A hug stemming from pure love and her beauty. She instantly loved Seth and I instantly fell in love with her six year old Brandon. It was like seeing Seth in the future. They both had the same hair, the same eyes, Brandon didn't care for me that much . . . he was too into his Nemo book. Yep he could read. That made me smile. Potential. The potential that I saw for Seth in Brandon's eyes and his loving family. They were so in love with their son and that transferred over to Seth and Seth was loving the attention!!!!

So if anyone was in the waiting room today, all eyes were on us. I felt them, the eyes of the other moms and dads in the waiting room. It's like they witnessed a magical moment, two families coming together over a commonality, one that has changed their lives, their personalities, has expanded their inner beauty and made them wonderful.

Another magical thing is the sharing of information that comes when you meet a parent that is going through the same journey. Instantly words like EI and IEP and ear tubes and sleep study and heart problems were thrown around. Because we KNOW. WE KNOW. We've been through it. She gave me the number of a place in New York that provides children with special needs over 3 years old diapers for free through their medical insurance. She took a motherly role with me and made sure I knew about all the programs available for Seth. I do, but I didn't know about the diapers. That will help our little family out a lot.

I helped her out by telling her that her son will be fine having his tonsils and adenoids out and ear tubes put in and that Seth benefited very much from having that done. I told her that the ear tubes will help with speech because better hearing equals better quality of speech. I told her that it was a hard thing to see your child go through but the outcomes of better speech and less sickness and improvement in sleep were so worth it. I would have liked to hear those things before Seth had his surgery. I needed to hear those things, but I didn't. But now I know and I can share.

So today was hot, very hot, Seth was sick, but after leaving the ENT we both had a glow, Seth and I. We had this glow about us and everyone we passed seemed to be smiling at us as we went along. The women at the blood draw place were ooohhinnng and ahhhinnngg over Seth, the person who drew his blood was so sweet and gentle. Seth got cake today, apparently after blood draws now my hospital gives kids cake (awesome for sugar replacement!!). You should have seen his eyes. They widened when he saw that cake, I imagine his thought process was "OMG I GETS THE CAKE!!!"

Leaving the laboratory for blood draws Seth is happily eating his cake, I drank his orange juice (juice and cake!!) for him (reflux + orange juice = BAD) and everyone we passed saw this little boy, eating his cake, making a mess and they only had smiles. So even though we were tired and I hate the heat like nothing else in this world, and Seth just had a needle forced into his body and instruments of torture stuck in his ears and throat, we sat down in the sun, him with his cake, I with my NY corner stand hot dog, and we ate and reflected on our day. I would like to think that Seth was thinking about how loved he is and all the great people he met today. That's what was on my mind.