Monday, 1 October 2012

I Not a Baby!

"I not a baby, I'm a big boy!"  I hear this sentence often at the moment and I can't begin to tell you the joy it brings me.  His other common sentence is, "Yes, I know that!".  He uses this when I give him my (unwanted) advice.

When Buddy Boy was a baby, I voiced to Hubby my biggest fear (and biggest wish).  "I hope he will be able to talk one day."  Many people with Down syndrome have difficulty with speech.  I now realise that I would have understand Buddy Boy regardless.  I understood him well before his speech was clear.  He used body language, mime etc. to make himself understood.  If you haven't communicated this way with someone, you probably don't realise how effective this communication method can be.

Nevertheless I love to hear my boy talk to me.  He is now six (nearly seven) and in fact, he talks too much!  He loves an audience and, if he can get the attention of everyone in a room, off he goes.  "Blah, blah, blah.  Oh, and one more thing."  He always has just one more thing to say.  His vocabulary is enormous!

With all children, it is nothing short of a miracle to watch them grow and learn.  It is no less amazing that Lou Lou, Rosie, Belle and Pumpkin learned to talk, walk, dress themselves, etc.  As a parent, I am so grateful to have so many wonderful children!

The difference is that I just took it for granted that my other children would acheive these goals. I wonder when, if ever, I will hear Buddy Boy constructing a complicated sentence and not feel that bubble of joy?  His achievement is even more amazing to me because he has physical complications.  When he was four, and was able to speak clear but simple sentences, he had his tonsils and adenoids removed.  He came out of the operation not being able to speak.  He was born with a submucosal cleft palate (a gap in the muscles of the roof of his mouth underneath the soft tissue) that no-one had picked up because he could eat and vocalise so well.  It transpired that the oversized tonsils and adenoids had created enough pressure to make the roof of his mouth taut.  Without them, he couldn't get enough tension to create the sounds.

He was horrified to discover he couldn't speak.  I cried many tears for a few weeks.  And this is what I mean when I say I can't take his achievements for granted.  He persisted until he managed to learn to use his new arrangement well enough to be fairly intelligible.  He can even whistle with his cleft palate!  I think in many ways he is a stronger person than I am.

Now we wait for surgery, hope it goes well, and hope it doesn't make it hard for him to talk yet again, as he gets used to the new structure.  He's on a waiting list, and to be honest, I'm in no hurry because I'm not ready psychologically yet.

So now, if I dare to hold up one of his sleeves to make it easier while he is dressing, if I try to help him into the car (to hurry him up, usually), if I fuss in any way, I hear, "I not a baby, I'm a big boy!".

On school mornings I lay his clothes out in what we call a Dressing Line.  If he starts at the beginning of the line and works his way up it, he ends up with his clothes the right way around.  On the weekends he dresses himself.  He chooses his own clothes and works out for himself which way around to put them.  It's very hit and miss!

Working on his barrow.  His own choice of outfit with shorts and top backwards!
I love this outfit from last year!  He chose everything himself.  Doesn't he look the typical pies fan, right down to the footwear!   'Scuse the mess.
I've never understood why adults point out when shoes are on the wrong feet.  With all my kids, while I taught them the right feet, if they got it wrong, I never said a word.  Good on them for being independent   They figure it out eventually.  And it's the same with backwards clothes.  I don't say a word, just praise his efforts.

I know it's not the done thing to wrap up your own kids to the extent that I have just done, but I can't help myself.  Buddy Boy makes me so happy and proud!

12 comments:

purplepear said...

Your story today brought tears to my eyes. We just don't realise what any families go through with their different challenges until someone like you feels that they can share their highs and lows with us. So thankyou. Buddy Boy is such a beautiful boy and I can imagine your fears about his future having worked with some special needs children over my time. But I admire your strengths and rejoice in your feels of pride.

Kim said...

What a wonderful gift your little boy is! I am so glad someone so special like your Buddy Boy is in the world. Thank you always for sharing his little milestones with us and sharing your joy. I love that you let your kids wear back the front stuff ....you are a brilliant mum!

livingsimplyfree said...

My cousin had downs syndrome as well. She was my favorite cousin because she taught me so much about unconditional love and kindness. Buddy Boy much be such a gift to you.

As for clothes, I let my boys dress themselves as soon as they could wanting to encourage independence. When my oldest was 3 and in daycare 3 days per week while I went to college, his teacher would tell him how wonderful he looked and enjoyed his many different outfits, knowing only too well I hadn't picked them out. Some days he went to school in dress clothes (including a tie) other days he mimicked the fad of the day wearing shorts over his long pants and a tank top over a long sleeved tee. But he teachers were wonderful and complimented his attire each day giving him much confidence.

Dani said...

I'm praying that all goes well with the operation - whenever it happens.

God gave the world Down's syndrome children / adults to show us how kind, thoughtful and genuinely happy people behave. They do not know the meaning of the word hate, disrespect or cruelty.

God bless Buddy - and Daniela :)

Christine said...

I love it when you share stories of Buddy Boy, Linda. What a special soul you have in him and he is so lucky to have you as a mum. xx

Busy mum of 3 said...

One of my biggest criticisms of myself as a parent is I don't foster enough independence in my children.

I often do it myself because it is quicker. I really want to change that. If you and Buddy Boy can do it...so can we.

Margaret said...

Good to hear Buddy has a huge independant streak, it will be useful in many future things he wants to try.
I once took care of such a little girl who had a huge repetiore of nursery rhymes, and loved to entertain anyone who would listen with her songs and was always keen to learn some new ones, it helped her feel part of any group, kids or adults and helped with her vocabulary too.
Buddy seems to be such an individual and you are doing a great job in fostering his self esteem.Hope the operation goes well.

Margaret said...

Good to hear Buddy has a huge independant streak, it will be useful in many future things he wants to try.
I once took care of such a little girl who had a huge repetiore of nursery rhymes, and loved to entertain anyone who would listen with her songs and was always keen to learn some new ones, it helped her feel part of any group, kids or adults and helped with her vocabulary too.
Buddy seems to be such an individual and you are doing a great job in fostering his self esteem.Hope the operation goes well.

Linda said...

Hi Kate, When things are running smoothly, like they are at the moment, we feel just like any other family. We have high expectations for his future because he is so capable already.

Thank you Kim. You're very kind!

Hi Lois, That is so good that their childcare workers were switched on enough to build his confidence. Isn't it great when they develop a style. Last year Pumpkin was very 'into' the layered look as well.

Thanks Dani. You're right. Though people with Down syndrome are NOT always happy like so many think, I have yet to hear of someone who is nasty or evil. Just people with normal moods. But without the worst characteristics of humanity.

Hi Christine, Thank you. And I'm lucky to BE his mum. He thinks he's too old to cuddle much these days but the occasional one I get is sooo snuggly!

We're all guilty of that Busy Mum. I guess I have more reason than most to really want to develop independence.

Hi Margaret, Buddy Boy learned so much from songs and rhymes when he was little as well. (Vocab, counting, etc.) Music is such a great motivation for so many kids. Thank you for your kind words.

Linn said...

Hi Linda, What a lovely post! Our 6 year old also has a submucousal cleft palate. He can make a lot of vowel sounds but can't speak many words clearly so uses sign and gestures to communicate. If a word has many vowels in it he can say that word quite clearly. Hope the repair goes well for Buddy Boy. Wish I could be so patient as you with the dressing bit.

Linda said...

Hi Linn, Fancy you being in the same position! Is he on a waiting list too? We are lucky in that Buddy Boy has relearned most sounds. He can be hard to understand if he talks too fast but otherwise can make most sounds again at the moment.

Darren (Green Change) said...

What a great story!

My 10-year-old daughter has Down syndrome. She doesn't speak much, but communicates a lot with sign, gestures, etc.

She loves to dress herself as well, although not as successfully as Buddy Boy. Usually she tries to put on every piece of clothing she likes, all at once!

She does bring us a lot of joy, and we're so proud of every little step she achieves in her development.