31 for 21 - Last Day

It's the last day of 31 for 21.  Cameron did his first trick or treat night that he's really been capable of doing.  He said trick or treat, thanked people, shook hands, and gave knuckles.  He was so tired by the time we got home he climbed up to watch The Great Pumpkin Charlie Brown on my lap and didn't even get to the "I got a rock" part.  He had so much fun all evening though running down the street signing candy and saying chocolate.

I see him turning into such a grown up little boy.  He's more independent and opinionated every day.  Thanks to a sweet friend who told me he was up for adoption and God's guiding hands, I was given this sweet boy to be a mommy too.  He's taught me so much and makes me so happy every day.  So many people say if everyone was more like someone with Down Syndrome the world would be a better place - they are right and because I try to see the world through his eyes, I'm a better person.

31 for 21 - Wow

What a great day to watch Cameron spending time with my parents.  When Cameron first came home to us, I remember my parents being so wary of him.  You could feel the old school feeling about Down Syndrome and them not really knowing how to interact with him.  They were so standoffish and they never had been with the other kids.  It was so interesting to watch those first few interactions because it wasn't like they hadn't been around special needs before with all of our other children.

Four years later, they are finally figuring out he's just a kid and a great kid at that.  He pulled them around showing them everything he could today and they willingly went.  He talked with them, showed them how to sign words, and played silly games with them.  It's so nice to see my parents finally enjoying him for who he is.

31 for 21 - Life Happening

I wanted so badly to have one blog for each day of 31 for 21, but life has again happened.  Between lessons with the children, doctor's appointments, outings, classes, family coming to visit, and the usual household day to day stuff I wasn't able to do it.

I thought I would give a what can happen in a month's time for a wonderful child with Down Syndrome.  In the past month my son's vocabulary has more than doubled for both spoken words and sign.  He's also answering appropriately when someone asks his age or how he is.  He's asking questions too like when I told him he would see his Granny and Papa the following day, Cameron asked me, "With my eyes?"  He's also understanding emotions for both identifying emotions in himself and others.  He also is using it for his own benefit like when he wanted an extra cookie and told us he was sick, asked for a cookie and told me, "Make better."  Manipulative little guy!

The Myomunchie is a wonderful tool.  It has helped with his teeth grinding, lessened his thumb sucking, and I've noticed an improvement with his articulation in just the week he's been using it.  I don't use it for a straight time period as he will not tolerate keeping it in for 20 minutes at a time.  So whenever he starts grinding I put it in and keep putting it back in every time he spits it out until he's done grinding.  We've made a game over growling like a monster to make it more fun to use it and it's working.

Cameron is also using the potty more.  Every night before his tub he is able to go potty on the potty.  We can't tell him to get on the potty or ask him to go because he always tells us no.  He's a very independent little guy and will do this on his own when he's completely ready just like everything else he's ever done.

He's also started using a fork and spoon regularly and in fact gets frustrated when he struggles with it.  He really wants it to do it like everyone else and even tries to use a knife to cut with.  He hasn't been as successful with that, but at least he's trying.

So it has been quite a month with Cameron.  He's an amazing little guy to say the least.

31 for 21 - Mouth Piece

Cameron has developed the horrible habit of grinding his teeth.  It drives me crazy!  First it was clacking his teeth and then he moved onto this grinding that is akin to scratching fingernails on a chalkboard.  I've tried giving him chewies for resistance in case it was sensory, reminded him to open his mouth in case it was an oral motor issue, and tried to make sure he had more structured time in case it was boredom.  Nothing worked except to drive me to the point of wanting ear plugs.  Someone told me about a mouth piece that can help children with Down Syndrome with teeth grinding, tongue thrust, jaw strength, etc.  At this point it didn't matter how much it cost, I wanted it!  So Cameron's myomunchie is on it's way.  It will be here on Wednesday and I can't wait.  I'll have to let you know how well it works once we get a chance to start using it.  Oh I can't WAIT!

About Myomunchies

NACD Purchasing Link

31 for 21 - Communication

All my kids have disabilities of some kind.  I find their struggles with communication seems to be the hardest to deal with.  If they are struggling with something physical, someone can assist them.  When it's a communication problem, you can't get into their head and help with the words they are searching for.  The other day I was in the garden and Cameron came inside which is normally no big deal.  All of a sudden he started crying.  He had fallen on a toy and cut his leg, but we couldn't figure it out at first.  He was just sitting on the floor crying with a few toys around him.  One of my sons finally saw one little car door was the same shape and size as the wound on Cameron's leg.  It would have been so nice in that moment of Cameron sitting on the floor crying for him to be  able to tell us that's what happened.

We had a speech therapist tell us once that children with Down Syndrome only speak 1/3 of the time compared to their typical counterparts.  From what I'm seeing with Cameron, it's not lack of desire.  You can see by his frustration level with his inability to communicate what goes on in his head.  He is this incredibly smart little guy with so much to say and do, but lacks the ability to put it out.  We work on his vocabulary daily through speech and sign, but this part of his functioning can't keep up with how fast he learns new thing and what he's capable of processing.

I cannot imagine how frustrating it must be to basically be stuck in your own mind - to have all these incredible thoughts, ideas, wants and desires and not have the ability to tell anyone.

31 of 21 - A Poem for Cameron

My Little Boy

There you are laying at my feet
My little boy oh so sweet
Not able to lift your little head
Fills my mind with all kinds of dread
What happened before you were mine
How many days did you not see the sunshine
I want to ask the question why
You won't look me in the eye
I want to take your hurt away
And pray it doesn't come back
Not for even one little day

I wrote this poem right after we brought Cameron home.  He was 6 months old, not able to lift his head or arms off the ground.  He was like holding a bag of water.  He had no eye contact and made not one sound.  He never cried for anything as he had been so severely neglected he had learned no one would ever come if he did.  We had specifically wanted to adopt a child with Down Syndrome and I was so happy to have him home.  I was so heartbroken for him, for the pain he had endured and the pain he was going to have to go through to learn to trust us.  Four years late, I'm proud to say, he has.

31 of 21 - Finding Peace and Acceptance

I've started and restarted this entry over and over.  I haven't been able to come up with just the right words to say.  I desperately wanted to have some great prose about acceptance and all I can think of is to say don't waste time worrying about everything your child won't be because you will miss out on all the great things that they are. I know the grief cycle, been in it often, still find myself there every once in awhile, but have found it a useless place to be.  By constantly focusing all that is not, all that is negative, it overshadows and darkens the beauty of what our kids are, no matter what the diagnosis is.  I've met so many parents over the years that are always hung up on how hard it is, everything their child does wrong, comparing their child to all the typical kids they know, and hung up on the things their child does that aren't age appropriate.  Wishing that things were different is one thing but having it consume your life or affect your parenting is another.

There are those children with severe emotion disabilities that makes it hard not to ever get out of the negative as their existence is all consuming.  I understand that more than most.  For those children I just feel pity. They will never know anything resembling a typical life and continuously hurt those around them that try to help them.  It's so sad to hear and see, but it's true it happens.  We had a foster child like that.

Finding the strength to let go and find acceptance is hard.  Letting go doesn't mean not helping your child improve in those areas that are lacking.  Letting go means being so excited about those baby steps that it far out shadows those negatives.  Typical children reach milestones, my kids make inchstones.  I celebrate each of those inchstone progresses like they were a milestone, because those inchstones will add up to milestones some day.  Even in my older children that are still struggling with some basic things.  I may not sing and dance with them like I do my little one who is potty training, but there are still small celebrations that I think are more for me at times than them.  Yes they get a positive out of it and are excited by our high fives and no they don't see my happy dance after they leave the room.  I don't feel the excitement any less than I did when they were small and overcoming the very basic firsts.  That excitement is still there for me.

I see all of my children as wonderful, beautiful beings that I have been blessed to raise.  They have their moments or setbacks - stealing from a store, losing their temper and hitting someone, being actively defiant and not caring, instigating all kinds of drama in the house, being so rigid in their schedule and ideas that anything but what they expect leads to a total meltdown, and total meltdowns over nothing.  There are days I am at wits end with them and wondering where I'm going to find the strength to weather yet another storm of issues.  I take a few minutes to think of those who have it worse off than I, what my kids have overcome, what we have weathered in the past, and the problem never seems as bad after that.  It's easier to accept what is happening and move forward with a more positive attitude, even in the most negative situations.

I love the saying, "Peace ~ It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart."  Look for those little things, those inchstones, draw those into your memory when times are tough, celebrate them in your heart even when you are ready to cry, and draw strength from knowing you are doing all that you can.

Day Whatever of 31 for 21

I guess you can see how the last two days have gone since I can't even remember where I am in all of this and think I missed a day.  In the last two days I've had 2 kids in for EEG's, decided to change one's schooling situation, started planning the kids' Halloween party, had a child come down with yet another ear infection, and threw out my back.

So at the end of an exhausting day when I was truly worn out and not wanting to deal with whiney children, leave it to my Cameron to perk up my night.  He started signing emotions!  Thank you Signing Times.  He asked if I was happy.  I told him no.  He asked if I was grumpy and I told him yes and I was tired.  He got me a pillow, took me to the couch, told me to lay down and kissed me night night.  His daddy came in and I told him what was happening.  He showed his daddy the signs for happy, grumpy, scared, surprised and sick.  We were so surprised and happy.

Too tired to write anymore tonight.  This momma needs some rest.

Day 11 of 31 for 21 - Emergencies

This isn't necessarily about Down Syndrome but thought it important to mention.  Today we had a fire near our house, close enough for them to start giving voluntary evacuation warnings.  Now I have 6 kids, all of which have special needs - some minor and some more severe.  Here they were, very scared, allergies and asthma flared up from the smoke, and yet they listened.

One became Cameron's buddy to keep him occupied and the rest started gathering things in case we had to leave.  They got the things in their room that were special to them - the blankets their granny made them and the stuffed animals from their gotcha days (the day we finalized their adoptions).  Nothing else mattered to them really.  They helped each other find things and even put everything away when we got the call the evacuations were cancelled.

Things sink in to kids even when we don't think they do and surprise us when we least expect it.

Day 10 of 31 for 21 - Socialization

Socialization is always an issue that's raised when a child is homeschooled.  In fact it's usually the first thing parents are asked when they tell people they will be homeschooling their children.  What about their socialization?  Isn't it funny that no one asks about their academics?  Kids go to school to learn, to become educated so it's interesting to me that so many people are concerned children won't be socialized when they are homeschooled and never question the academics.  Thinking back to my own brick and mortar education, it was come in, sit down, shut up and do you work.  The only socialization happened at recess and lunchtime.  Occasionally we would have group projects or have an assignment to do with someone else, but for the most part school was a singular thing.

Today we were informed by a SLP that my son with Down Syndrome throws things because he's not properly socialized from being homeschooled.  He's 4 years old and yes he throws things.  He doesn't do it maliciously or out of anger.  He does it because he loves to see things fly through the air.  Anything that goes through the air is cool to him.  It started when he was about 2 and first noticed helicopters.  After that everything started to fly.  Basketball is his favorite sport and is incredibly happy when we play with him because we can throw the ball up higher than he can (not by much anymore).  My son does not have meltdowns, hit, spit, kick or bite like his public schooled counterparts.  He is polite, has and maintains friends, and is very outgoing.  Don't get me wrong he's quiet keen on showing his displeasure and has learned the art of pretend crying while squeezing his eyes closed as hard as he can to try to get tears out.

What's also interesting is I have had more calls in the past year from parents looking to homeschool their child with Down Syndrome than I ever have in the past.  The major complaints are that the child is miserable at school, they have developed terrible behavioral problems, and that the school does not seem to be able to reach their child.  It only makes sense to me to have a child in a setting where they are comfortable, loved, accepted and supported for who they are - a person first, a son or daughter, a sister or brother, a friend, and somewhere down the way a child with Down Syndrome.

Cameron was leading the YMCA at a good friend's wedding reception.  Everyone in attendance ended up on the floor with Cameron in the middle of everyone doing the YMCA at a whopping 3 y.o.

Cameron and his older brother Dustin having a peaceful moment.  Like I said a child, son, brother, friend and somewhere down the way, a child with Down Syndrome.

Day 9 of 31 for 21 - Organizing Time

Having 6 kids can really be time consuming.  Cameron is such a happy kid and so easy going, I'm always afraid that he may not get the time and attention he deserves because I'm so busy with the other kids.  I hear of other parents of children with Down Syndrome who say their child doesn't mind when they are busy.  My concern is that my child might be bothered by it but just doesn't complain because that is his nature.

At the beginning of each month I make a list of things that have to be accomplished by the end of the month.  I then break it down over the following weeks trying not to overload weeks filled with appointments.  Then I assign the things to my easiest days to keep life as simple as possible.  It's not fool proof but at least it helps me organize my time where I have time for all the kids and all they have going.  I never want the kids to think I don't have time for them.

Day 8 of 31 for 21 - Signing Times

Signing Times is the new favorite videos in the house.  Cameron especially, but all the kids are plastered to it to some degree.  It's the first video or TV he's really been interested in.  He asks for the videos and would sit watching it for hours on end if I let him.  Ever since he started watching them, he started talking and signing more and more.  He's so cute when he keeps signing to watch it and pulling us into the room telling us NOW!  I just cannot believe how much it has helped him.  I've always been a mom to limit screen time, but I'm having to reevaluate that now.

Day 7 of 31 for 21 - Frustration

I hate to see Cameron frustrated.  He's in a phase where he understands so much more than he can say.  He's horribly frustrated trying to communicate what his brain is thinking and can't get his ideas across.  We try to give him the words or the sign for what is going on.  Sometimes we get a sweet, "Ohhhhhh" and other times he's on the floor having a little tantrum.  He works so hard to communicate and be understood.

Today he was trying to tell me he wanted to play with a certain toy.  I could not understand what he was telling me.  I kept guessing and when I finally got it right he said, "Well YEEAAAHHH!" like I should have known all along.

Day 6 of 31 for 21 - Prenatal Testing

I know this is a controversial topic.  Before making any comments, make sure they are not inflammatory and something you would read to the most conservative person you know and not be embarrassed.

I was looking at some research and was quite disturbed to see that the abortion rate for cases of suspected Down Syndrome is around 90%.  I was horrified!  I look at my sweet son and wonder how anyone could feel this was a bad thing.  The way he runs to me every morning with his arms open, smiling and squealing, "MOMMA!" just makes my heart skip a beat.  My life is so much richer because of him being part of my life.  I cannot even begin to describe how deeply he affects the entire family, the overall love and joy he brings just to look at him and hold him.  I found this video and thought it says it very well http://www.youtube.com/watch?v=o97-WxFsZiA

I know abortion is a taboo topic, but just knowing that children are being aborted because they may have something that is different from the norm is crazy.  To me, that is like a parent turning their back on their child after having a disabling accident.  Generally that would not happen.  The majority of parents would buckle down, learn how to take care of their child and keep going on no matter how hard it is.  These poor children aren't even being given a chance and for why?  I guess that's too personal to speculate.  Maybe it's because it would be hard or an embarrassment.  Maybe it would be too scary or feelings of inadequacies.  It's too bad so many parents are not giving their baby with Down Syndrome a chance.  They are missing out on a journey of a lifetime.

Day 5 of 31 for 21 - Friends

We all know the importance of friends.  As adoptive parents of special needs children, sometimes those friendships are invaluable.  With adopted children we have some unique situations and issues to deal with that very few parents will ever experience let alone even want to try to understand.  Over the years I have been blessed with finding friends that "get it".  They've been there, done that, worn the t-shirt out and got a new one.  I've had phone conversations with them in the middle of the night after sitting all day with a child in the hospital, the most amazing prayer warriors saying prayers in all different religions with no conflict between anyone, and just knowing I can tell them anything and never be judged.

Four years ago when Cameron came home, I was blessed to have these friends to rely on who were knowledgeable and understanding.  When we almost lost Cameron 2 weeks after his placement, they were all there for us.  This is all in spite of the fact I am one of the few that has adopted a child with Down Syndrome.  What's nice is in their eyes, he's not Cameron the Down Syndrome child.  He is Cameron, Captain Destructo, a little guy that makes so many people laugh, and a loving little boy.  Near or far, I know I can turn to any of my friends about my kids and they will all be accepted.

Thank you friends for all you have done and all that your are.  I'm a better mommy because of all of you.

Day 4 of 31 for 21 - Finding Humor

I was too tired to come up with anything about Down Syndrome or my life living with a child with Down Syndrome, except I can say out of all my kids' with all of their special needs, Cameron has the ability to make me laugh quicker than any of them.  His mischievous smile and "evil" laugh can make anyone giggle.  So that being said, parenting has it's challenges no matter if your child has special needs or not.  How many people in their lifetime would find themselves saying things like:

Stop hitting your brother's head with a hot dog.
No, we don't decorate the Christmas tree with rubber snakes.
Sweetheart, your hair looks like Swiss cheese.  Where are the scissors?
Why are your teeth glowing?  Poison control, how toxic are those light up bracelets?
I'm sorry boys but we aren't naming your new sister Tarantula or Bologna.
Um, honey, those are mommy's.  No they aren't play dynamite sticks.
Excuse me did I hear you right?  He peed on his brother's head by standing on the play structure as his brother walked past and you want me to come pick him up?  No sorry, if I do that he'll be peeing on every kid's head every day.

I look forward to seeing what other crazy things I end up saying to my kids and the laughter I will get to experience because of them.

Day 3 of 31 for 21 - Heart Break

Today was another one of those days with our neighbor.  We have someone that lives near us that is far from accepting of my children.  Rude comments are made often, complaints even more often.

One day Cameron was playing in the backyard pretending to build his house.  He had a plastic hammer and banging on his plastic playhouse.  The shouts started over the fence to make him stop and take him inside.  There have been comments about Cameron "grunting again" when he's just trying to talk to me.  Now today Cameron was singing and pretending to play a guitar and then a drum.  He loves to sing and dance.  So what is said, "How long is he going to do it this time.  Can't you control that kid at ALL?"

My heart breaks because I know this isn't the only time my son is going to experience this in his life.  He can't help he was born with an extra chromosome.  I just hope he always realizes I am SO incredibly glad he was.  He is such an incredible person because of it.  When someone gives him a chance, he always melts their hearts.  He has so much love to give and brings smiles to everyone's face that spends time with him.  How anyone could treat him so cruelly I don't know.

Day 2 of 31 for 21, Unschooling and Downs

I love homeschooling my children. When Cameron came into our lives, homeschooling him seemed like the natural thing to do. With his attachment issues, the thought of sending him away to school at three years old for so many hours a week seemed to be the wrong thing to do. Not to mention I was not comfortable with the preschool program he would go into.

We have chosen to unschool Cameron. He's such an eager learner and so willing to try I really did not want to do anything to change that. He's never been forced to learn anything, made to sit through lessons, or put in a position where he was not in control of his learning environment. As I am writing this he and his eldest sister are sitting on a bed watching Signing Time videos because he asked for them. She's working with him on his signing and they are both absolutely loving their time together. This is how all of his lessons work. I have picture vocabulary cards (160 of them) and math manipulatives for him to use. He goes and gets them, we go over his work until he tells me he's all done.  As soon as he says all done, then we stop. We play with playdough, color, paint, match Legos by color and build them bigger and smaller to compare them, match same and different with toys, set the table and count the plates for one to one correspondence, work in the garden, go on nature walks, read books, and watch educational shows and videos. The best part of all this, Cameron never has any negative behaviors when it comes to learning. He only tells me no about doing something only to find something else that's educational. He may tell me no about doing his vocabulary cards, but go get his Legos or want to do Wii (which is great for gross motor skills) or read a book.

I do have resources that I have used to give me ideas to make his learning more effective. I have found Teaching Reading to Children with Down Syndrome and Teaching Math to People with Down Syndrome and Other Hands-On Learners to be invaluable.

I have had many people ask if this really works. Cameron is 4 y.o. and reading site words, counting to 5, almost has a regular pencil grip, is potty training himself, bathing with very little help except for his hair, he can run and jump not to mention climb just about anything, is saying 3-4 word sentences, helps with chores, and has friends. I think he is a huge success.

Day 1 of 31 for 21

I have been thinking of starting a blog for awhile and when I heard about 31 for 21, I knew it was time to start it.  What is 31 for 21?  October is National Down Syndrome Awareness Month.  31 for 21 is a time to write something every day for the month of October about Down Syndrome or about a person in your life with Down Syndrome.

I have been blessed with a son who has Down Syndrome.  We honestly thought we were done adopting and then I told someone we would adopt again only if we found a child with Downs.  She told me about a little one waiting for a forever family.  Two weeks later, Cameron came home.  That was four years ago.  He came home at 6 months old a total lump, unable to pick up his head or arms off the floor only to develop RSV two weeks later and almost die.  To look at him today you would never know.  He is a 4 y.o. boy to the core - sticking his tongue out at little girls, getting as dirty as he can every chance he gets, crashing anything and everything, and smiling that mischievous smile only a little boy can do just before he gets into trouble.

I think what is incredibly special to me about Cameron is he has finally learned to trust.  When he first came home to us, he had no reason to trust or bond and no way to understand a loving, affectionate family.  He definitely had bonding and attachment issues.  Cameron was a child that would happily sit and play by himself and never fuss, he would not cry for help, not call out in the night, and hugs, snuggles and kisses were things he could care less about.  In the past year I have watched a wonderful transformation take place.  Now my little boy runs to me for hugs, asks to be held, comes to me in the night just to be snuggled, makes great eye contact, and asks to play with other children.

His short life has brought me so much joy and so much to inspire to be and do.  He understands what life is about - playing hard, loving deeply, laughing frequently and taking the time to sit with someone you love and just hold their hand.