what he may never be

On the day we got confirmation that Owen did indeed have Down Syndrome we cried alot and then we started to laugh a little and say consoling things like well....

"he'll never be a drug dealer" and "he'll never rob a bank"

And few days later after making those comments we were told about a young woman, (who lives just a few blocks from us) who has Down Syndrome and who holds a drivers licence driving herself around town, to her work and to her table tennis and swim clubs. We were thrilled just to hope that this may be possible for Owen. But then to our (mock) horror we realised

"he may not rob the bank, but he might drive the get away car!!"

his middle name is Magnus

After having Owen I was sitting in the hospital a day or so later flicking through baby name books looking for the perfect name for him, I was listening to the radio and the U2 song Magnificent came on (I'm a complete 90's tragic for U2) some of the words in this song are...

I was born to be with you
In this space and time
after and ever after I haven't had a clue ......

This foolishness can leave a heart black and blue
Only love, only love can leave such a mark
But only love, only love can heal such a scar

Justified till we die, you and I will magnify
The Magnificent, MAGNIFICENT

At the time this song really touched me (heck it still does) and I started flicking through the book to find a name that meant magnificent, that's how he got his middle name Magnus.

His first name means Young Warrior and indeed he is a Magnificent Young Warrior

Scribbling Art

This may look like scribble but it was drawn with absolute intent and concentration.

Owen spent over 20 minutes drawing this and other masterpieces this afternoon. He swapped the crayon from hand to hand, remaining focussed and kept stopping to point at what he was drawing, he definitely knew what he was doing, it was beautiful to watch.

I bought the Crayola Twistables Slick Stix Super-Smooth Crayons they are super easy for Owen to use because he doesn't have to press very hard to get a vibrant result and taking the lid on and off is really for good hand eye co-ordination and strengthening exercise for his hands - they get the thumbs up from me.

coming out of the woods

In keeping this journey real I wanted to tell you that I have needed some help to get to acceptance. I have had about 6 sessions with a counsellor now and it has really helped. Before the counselling I was really suffering a lot of anger and sadness, I felt like I was emotionally running close to bankrupt and I was saying horrible things in my head to myself (I felt doomed)and to Owen (things like "whats the point" - things mothers shouldn't think about their children). I wasn't thinking these things all the time it was usually when I hung out the clothes or had a shower - in those alone times. And one day in my frustration over something I can't even recall now - I called Owen the R-word (in my head) okay that is really shocking and hard to write about! But it snapped me back to reality I burst into tears and I rang and made my first appointment.

The counselling has been fantastic I got to blurt out all my fears and worries unedited (that was the most important bit), I just laid it all out there raw, ugly and unedited, and I cried and cried and cried, because under the anger and frustration I was actually very sad. I was so emotionally exhausted because I had been acting like everything was okay to everyone and that took alot of energy, I wasn't being honest -because I really wanted everything to be good and it seems no-one wants to know when things suck. So over the past few months I have been really trying to be honest when I am having a hard day - I cried recently when a friend at playgroup brought in her new baby, I just let it all out because her baby was surrounded by love and joy from everyone at playgroup and I felt that Owen and I didn't have that, ours was uncertainty and fear and sympathy. So I quietly cried and I explained what I was feeling to the mother of the new baby and she was so understanding and kind and supportive, and then that moment was over and we got on with playgroup. If that situation had happened in the past I would have bottled up my emotions until I got to the car and then burst into tears and I could have been sad for a whole week. This situation made me realise that if I am honest with myself and others I can move toward acceptance with support.

So a funny thing has happened since I have taken on a more honest approach - things really are good, I don't have to pretend, my alone times are filled with "in the moment" thoughts, not fear about our future, Owen is being delightful and things are kinda easy for the first time in a long time. Its still hectic and busy in this house but I don't feel emotionally bankrupt I have energy and I fall into bed at night tired but relaxed, not anxious about what tomorrow brings. I will continue to have counselling every 6 weeks or so - just to keep the momentum cause I know that I am not out of the woods just yet.

Kelle Hampton posted this on her webpage recently and I am reminded of it in writing this post today.

This is an ancient Native American story about an old Cherokee who told his grandson about the battle that goes on within us.

"My son" he told him, "Inside everyone of us dwells two wolves, one evil, one good. The evil one is angry and jealous, full of regret and arrogance, greed and sorrow, guilt and self pity.
The other is good. He is kind and loving, full of hope and peace, joy and compassion". The young boy thought about it for a moment. "Which wolf wins?" he asked his grandfather.
The old Cherokee smiled and simply replied "the one you feed"

Feed your good wolf....

Hair and tail pulling

So Sasha at The Wonder of Wysdom asked me did I have any suggestions about hair pulling and I am pleased to say I have had some success with this behaviour.

Of course we tried OUCH, stop, gentle, no - etc etc all to no avail.

Instead I have redirected his fascination with hair into positive behaviour

• Initially I started with playdough/sand/the top of the table (I know that sounds weird but stay with me here)
• I used KEY words like pat, and rub and a hand over hand technique initially to show him the meaning of the words and what they feel like.
• we did this every day - salt and peppered throughout the day for a few days
• when he was let near hair again he would GRAB and PULL and I would immediately say RUB, RUB, PAT, PAT and guess what - he started rubbing and patting and then we would say awwwwh thats so nice and gentle rub rub, pat pat Good Boy etc laying on the positive reinforcement pretty heavily.

He will still grab at my hair every now and again but as soon as I say those key action words he drops my hair gives me a pat and rub and is very gentle with me.

I have also used this technique to teach him to be gentle with our new (rescued) dog Shadow. We got him at New year (after losing our dog 5 years ago we finally felt ready to have another) we spotted Shadow on the RSPCA website and fell in love with the old fellow (he is 5 years old) he has the most amazing nature, so gentle, placid and cuddly, and Owen really tested him by pulling his hair, tail, ears and beard at every opportunity. As soon as I saw him making a grab I would remind him to pat and rub and he would do that instead - but it has taken a few weeks for Owen to learn just to pat and rub (cause that tail is just made for pulling isn't it ???????)

This is a photo of our new addition Shadow with the boys

Up up up....and away (I hope!)

I just wanted to update after our camping trip when I was worried about Owens groaning and yelling behaviour that he does when he is overwhelmed/frustrated/tired or bored.

We have tried, in the past to ignore this behaviour but that didn't work at all and saying NO hasn't work either. After that camping trip and quite a bit of thinking I have been addressing the behaviour like this;

When Owen is groaning/yelling I respond quickly by

• going over to him and saying his name
• and then waiting for him to respond
• if he doesn't respond I touch him gently on the shoulder and he always stops yelling/groaning
• then I say to him - do you want to come up, up ??( I repeat the KEY word and use the natural open arm gesture)
• and I wait for him to respond - initially I had to model what I wanted him to say, so actually had to say to him - "say up", he learnt quickly and now he responds by saying "uhhhh, uhhhhh, uhhh" and putting his arms out to be picked up
• I pick him up immediately

I know I am still responding to the yelling/groan and I worry that I am still reinforcing it but I hope that by responding quickly he will learn not to go on and on with it as he has in the past. I hope that over time the yelling/groaning will begin to fade away (it has already lessened considerably) and I think as he begins to understand the POWER of words this will happen. I needed to break things down into more steps than you would a typical kid but this strategy is working really well, he seems happier-I am happier!!