Tag Archives: special needs

Teaching an old dog new tricks (or 3 things my son has taught me)

I have a low tolerance level for many things in life, and apparently am not shy about expressing this.  In share houses over the years, before I married, there were many running jokes about my scathing statements of disbelief at the actions of others (normally my friends or flatmates), and while I still maintain that many of my comments were warranted (particularly about the infamous exploding dish of sausages incident) most of the time it just served to remind me that I can have a short fuse and a cutting tongue (and, of course, to try and temper it).  For a long time this amused me (I was young and arrogant). Then I became a parent, and it worried me.  I have clear memories of sitting with a neighbour (who seemed to have her life together) and confessing that I felt that all I did was yell at my children.  She sensibly questioned whether that was in fact true, and helped me to see that I wasn’t operating in a state of constant anger, but I certainly worried about it all the time.

Fast forward 7 years or so, and I have realised that I have changed.  On Monday, whilst my son was having a meltdown, I ended up with an injury to my hand that required a trip to the emergency department. (Nothing broken, just sprained.)  In conversation with an acquaintance she asked how I managed to keep my cool, and not punish my son for his actions, and I realised that at no point during this incident had I yelled at him.  This old dog (purely in the sense of abusing the clichéd phrase) has learnt new tricks.

Raising my children has helped me to mature and grow in many ways, but I think the most valuable lessons have come from facing the challenges that raising my boy brings.    He has helped me to learn some important lessons, and change my behaviour.  At the moment I am most conscious of three gifts he has given me:

1.  Controlling my temper and emotions.

Anger Quotes | http://noblequotes.com/When dealing with a child having a meltdown, punishment is not the answer. Angry words used to a child who is already in sufficient pain to be raging against the world will cause more damage than they solve.  Reacting in anger is just throwing fuel on an already well burning fire. Providing reassurance, security and support, and looking for the source of their pain has better short and long term effects, and leaves you feeling better about yourself (win, win!)  None of this is rocket science, but so many of our reactions as humans, formed through our own life experiences, are habitual, so changing those habits is tricky.  Having a child who doesn’t respond to your habitual responses either makes or breaks you I think!  In my case I had to learn new responses.

2.  Knowing what my priorities are.

DON'T QUITIf you have your priorities clear, decision making becomes easy.  (Yes, I know that is obvious but it has taken me a long time to get that sorted in my own head.) Today a former colleague (and still friend) asked if I wanted a job with a great organisation doing work I would enjoy.  After two seconds of thinking ‘that would be great’ I calmly explained that I can’t do that, as my boy needs me, my girls need me, and I can’t ask my parents to take on the level of responsibility that being a full time carer to my boy requires.   And it was okay to say that. I didn’t have to fake being calm about that decision.  (Ginormous step forward!  No furiously planning which strategies could be put in place to make it all happen, whilst juggling 5000 balls in the air. Just acceptance that this is not the right time.)

3.  Patience.

Patience is the calm acceptance that things can happen in a different order than the one you have in mind.This last discovery will shock my old friends. It appears that I have learnt to be patient. Well, more of the time than I used to.  This week I can’t sew, can’t paint, can’t crochet, and can’t attend to a whole list of things I want to be doing because of my injured hand.  Instead of fretting, feeling frustrated, or whinging about it, I have accepted that my plans have to be on hold for a while.  This is a big change for me!  I have chosen to see it as time to do other things, and for the most part that is working out.

Raising a child who sees the world in a different way, and who wears his emotions outside his skin so he feels raw and bruised much of the time is hard, and it wears me down. But honestly, it has been the making of me.  A number of people have told me that he is lucky to have me as his mum, but they have it wrong.  I am lucky to have him as my son.  He has made me a better person, and definitely a better parent.

As a final note, and in keeping with the theme of teaching old dogs new tricks, we are currently minding a friend’s Labrador for a month, and Dottie, our insane and aging terrier, who was so traumatized by our last attempt to bring a new dog into the home, is coping!  I have long thought that giving my boy his own dog to care for and play with would be great therapy – and so far that is proving true.  I see another dog on our horizon!

I hope that you are well, and finding good in the rough patches of life.

a little bird made me

25/07/2015

If you want to get me cranky, protective and outraged, give one of these statements a try when you are next talking to me.  Even better, use most of them in one conversation, and do it in front of my son.  That is a sure fired way to ensure that I will discount your helpful suggestions on how I can better do my job as his mother.  (It will also 100% guarantee that I will write a blog post about it.)

1. He just needs to fit in with everyone else

You think?  Wouldn’t it be great if just telling him to fit in with everyone else was the answer.  Wouldn’t it be great if we were all cut from the same mould and could fit into the designated slot in life that you think we should fit into.  Oh, and while we are at it, thank you for telling me, after knowing him for a very short time, how you know what he ‘needs’.  Because up until now, while I have been dealing with schools, psychiatrists, paediatricians, psychologists, police, social workers and the government, it never occurred to me that I could solve all of this by telling him to fit in.

Fitting in.  What does that look like?  Is that where he doesn’t say anything that makes you feel uncomfortable, doesn’t question whether something is fair or not, doesn’t overreact when he feels he is treated unfairly, and doesn’t interrupt your vision of what your life should look like?  Wouldn’t it be nice if he did fit in.  Did it ever occur to you that perhaps all he wants himself is to fit in.  To not be the kid who can’t cope with too much noise, or with not being perfect at something the first time he tries, who can’t understand why other kids don’t get his sense of humour, who worries that other kids don’t like him because he gets angry when he is overwhelmed.  To be ‘normal’.why fit in when you were born to stand

Guess what?  I don’t want him to fit in.  If he fitted in, in the way that you want him to, he would lose himself, and all the good things that go with being him.  His awesome sense of the ridiculous, his ability to give hugs just at the right time, his sharp mind and amazing strategies, and the endless possibilities that are open before him because he has to work so much harder than everyone else to do the same things that other kids in his class do with ease.

I'm beautiful in my way'Cause God makes (2)

2. He is just doing this to get attention

Of course he is!  What kid climbs an electricity pole in the middle of winter and declares that he won’t come down, in order not to get attention?  What kid rings his mother who is many hours drive away and threatens to kill himself, in order not to get attention?

The question is not whether he wants attention, it is WHY he wants attention.  What overloading of his senses, his ability to cope, his sense of fairness has happened that is causing him to act in such an extreme way?  And what can we do to help him to see that he is loved, supported, and cherished, so that he doesn’t need to behave in this way in order to get our attention.

3. He needs to understand how this makes (insert name of choice) feel

Ouch.  There it is again.  What he ‘needs’ to do.  If only he can rewire his brain circuits so that he understands other people’s emotions clearly, and take them into account when those people are contributing to his need to seek attention, then everything will be okay.  You will love him if he understands how his behaviour is affecting you.

Maybe, just maybe, you might like to think about how an 8 year old kid sees the world.  Forget whether he has special needs or not – most 8 year old kids are still fairly egocentric in their actions.  Telling him to take your feelings into account and to stop this behaviour is not, unfortunately, a magic cure-all.  If it was then I would be rich, having saved many thousands of dollars on specialists because I could have taken your advice for free.

4. He needs to understand the consequence of his actions

Uh-huh.  Again, what he ‘needs’ to do.  Because if he can just think about what his behaviour is doing, then he will stop it, straight away.  Can I remind you again, using small words, that this boy is 8 years old.  He doesn’t like hurting people.  He doesn’t like feeling hurt.  He doesn’t like constantly stumbling through life, letting people down, making mistakes.  If he could, at this age, think of the consequences of his actions and therefore change his actions, don’t you think he would?

5.  He is going to have a miserable life if he doesn’t start to improve his behaviour

Grrrrrrr…….how dare you presume to tell my son what his life is going to be like. And even worse, how dare you tell him that his life will be bad.  He believes the things that adults tell him.  Ever heard of a self-fulfilling prophecy?  And quite apart from my emotive response to how an adult can be so cruel to a child, how on earth do you know what his life is going to be like?  Have you seen the amazing steps he has taken over the last couple of years?  Do you know just how bad things were 3 years ago?  Do you know how much work and support I put into ensuring that in fact he has a wonderful future ahead of him, and how much he looks to the positive future now? And finally, do you honestly think that this is his choice?!  What on earth is he hoping to gain by ‘choosing’ to behave in this way, particularly when not behaving in this way has so many more rewards!

 

Lead by exampleAnd finally – don’t ever, whether a child has special needs or not, talk about that child in such a way in front of him or her.  It is cruel.  And slightly ironic.  While you are so busy telling me that he needs to control himself, behave better, understand the consequences of his actions, you are doing the exact opposite.  Perhaps leading by example would be a better way to help him.

Vent over!  Regular programming will resume shortly!

A small post-script.  If you think you recognise yourself in this post, you probably do.  (And we may never have met.)

 

Ups and downs

This week has been a whirlwind of activity. Meetings, errands, nights out, housekeeping, and one glorious day at home. And this is what I designed and made in that day!

Teething rings|a little bird made me
Teething toys with a wooden ring and one of my silicone tips! I do love a new product!

I also completed a custom ordered cushion cover for a 9 year old’s birthday. I challenged myself and made and installed piping for the first time. (I need to perfect corners!). I was to deliver it yesterday, but when I got to town I realised that I had left it at home. I rang mum and she met me half way to hand it over, and I dropped it into the Shop on time so that the customer could collect it. Phew. Then I get a message last night saying the customer loves it but I have missed a piece of applique stitching.

IMG_5026.JPGAnd she is right!!! I am mortified- and having to laugh at the irony that after being so proud of my efficiency in getting it delivered despite having forgotten it, I then had to drive in to town and collect it, repair and return. I was getting too smart for my own good there!

Every day a little thing happens to confirm that moving out here and sharing the property and our lives with my parents was the right thing to do. (And not just Mum driving to meet me half way when I forget something!). They babysat for me twice this week and there was no stress, no drama, just normal routine for the kids. Of course the down side is that two late nights in a row mean two late nights in a row for them.

It is not without it’s challenges though.  Life with children brings new and interesting surprises every day.  Today was the announcement by my boy that he had been testing how strong the pipe from the dam to the pump was, and now there was water coming out of it…….  Some investigation and breathing out later it was revealed that the strength of the pipe had been tested with an axe……..   More breathing out and mantras of calmness later a solution for repair was identified, and the pipe is fixed.  For me it identified that this was nothing to do with my boy’s special needs, and everything to do with him being an 8 year old.  He is testing boundaries, exploring our new environment and having fun.  And 8 year olds, no matter how intelligent, don’t always think of the consequences of their actions.   I had to think back to things I did when I was 8.  And remind my Dad (who was struggling to understand why someone would do something like this) of how we behaved when he was 8.  It helped us both to breathe out, and keep our cool.  Just.  Needless to say, the axe, the pocketknife, and all other tools are now out of bounds for some time.

One day full of production, and one day full of unexpected activity that felt like nothing was achieved.   The ups and downs and unpredictability of life!

For now I am back to my plans.  New products to make, an online shop to open (or re-open), baking to do, and events to attend.  And to keep our spirits up, this tree in the front yard is ablaze with colour.  Fingers crossed that I get a day of production rather than a day of unexpected activities.

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What no one tells you about parenting a special needs child|a little bird made me

What no one ever tells you about parenting a special needs child

What no one tells you about parenting a special needs child|a little bird made meIn the last couple of years I have had to come to terms with the diagnosis of my boy as having special needs.  I have been walking through the fog of discovery ever since, usually taking one step forward and two steps back.  I have been extremely fortunate that I have a wonderful family who provide great moral support even though none of them live within driving distance, a steadfast group of good friends, and that I have the skills to research and find the information I need.  I have also had to learn a new set of skills and shift my thinking dramatically about so many parts of my life, so I thought that if I shared a few of those discoveries here it might help someone else who ends up in the same boat.

1. You have to become your child’s advocate.   There is no one else in the world who knows your child as well as you, and who has more right than you to stand up for what is right for your child.  If you aren’t comfortable challenging the authority of teachers, principals, doctors, or your own family, it is time to learn. Challenging them doesn’t need to be aggressive, but it does need to involve questioning whether there are other options, whether factors that affect your child have been taken into account, and whether this is in the best interests of your child.

What no one tells you about parenting a special needs child|a little bird made me

2. There are laws to protect your child from discrimination, but the only person who is going to remind anyone about them is you.  Become aware of your rights and your child’s rights. When the school says ‘oh he/she can’t join the class to do (such-and-such) because he/she will be (insert any myriad of reasons)’, don’t agree and apologise for the inconvenience that your child has caused.  Instead ask what reasonable steps they could take to include your child in the activity.  Often just by asking the question they will be reminded that they have a duty to try and include your child, and will take steps to do so.

3. You cannot do everything yourself.  No matter how independent, strong and resilient you think you are, when you have a special needs child you need to make sure that you ask for help when you need it, or accept an offer of help when it is made.  Your child needs to have other people in his/her life that they trust and are comfortable being with, and you need to have people that you can leave your child with, knowing that they will be cared for and looked after.

What no one tells you about parenting a special needs child|a little bird made me

4. You will learn to appreciate little things that make life good.  I used to think in terms of a good week, or a good month. Now I celebrate a good hour, and sometimes even just a good decision about something small.  Being able to sit and drink a good cup of tea in one sitting is worthy of a celebration isn’t it?!

5. You will become very good at making apologies for not attending events.  I have lost count of the number of times I have had to give last minute apologies, not accept an invitation, or rearrange plans because I know that I need to stay home and not disrupt (further) our routine by going out.    I used to feel embarrassed or awkward about it.  Now I just say “I am very sorry but a family commitment has come up and I won’t be able to attend’, and no one ever complains to my face.  It is about establishing your priorities – what is more important – your children or your social obligations?

6. It is okay to trust your own judgement.  I recently took my children on a spur of the moment holiday to Hawaii.  (I know – crazy stuff!)  If I had thought about it for too long I probably would have listened to all the warnings about travelling with my son, and what could go wrong.  But instead I relied on my own judgement that I could manage the situation for him, and for his sisters, and although I began to question my own sanity on the overnight flight there (when no one slept and he was becoming agitated at the sound of a toddler crying) it turns out that I was right.  By taking everyone’s needs into account we had a lovely holiday that was much more stress free than life at home usually is!

What no one tells you about parenting a special needs child|a little bird made me

7. You have to look after yourself.  This one is probably obvious to many of you, but it wasn’t to me, and I learned the hard way what happens if you don’t read the warning signs.  I had a breakdown/burn out at the end of last year that has forced me to learn what happens if you just keep going without caring for yourself.  Whether it is having time to read a book, catch up with friends, have a hair cut, go for a walk – something that soothes your soul, and re-energises you is essential if you are going to be a good parent.

8. Special needs kids fight with their siblings just like other kids.  My boy and one of his sisters argue with each other a lot.  It is loud, it involves lots of whining, and it drives me crazy.  But I have to remind myself, and everyone else, that this isn’t because of his condition – this is standard sibling stuff going on.  And in the same way, the two of them will play together for hours without a cross word and get angry with their older sister for interrupting the rhythm of their game.  Sometimes kids are just kids.

9. You will get to know all sorts of amazing new people.  I have become friends with other parents of children with special needs who I would not otherwise have met which is great for support, but in fact, because my son looks at the world in a different way, he talks to people I would never think to engage with. I have lost count of the number of times we are at a shop and all of a sudden the lady at the fruit section is chatting to us about her life, or at a camp-ground and we are invited to join a camp-fire because they have met my son, or at a park and the other parents know that I make and sell things, thanks to my greatest advocate.

What no one tells you about parenting a special needs child|a little bird made me

10.  You will learn to laugh at yourself and with your child in a whole new way.  Okay, so maybe that is because if you don’t laugh you’ll cry some days, but laughter is good for us, and if you can remember to laugh at the ridiculous, everything feels so much better as a result.

If you have any points to add here, please feel free to do so by commenting!

Two steps forward, one step back

My small start back into sewing went quite well last week.  I made a few more iPad covers, remembered (well – was reminded) that I still ‘owed’ my kids a few promised sewn projects, and started developing some new designs.

One of the products that I want to develop is a man’s wallet.  (I also want to make a woman’s wallet/purse but with Father’s Day around the corner thought that the men’s products had to take priority!)  I played around with some ideas and then made this prototype.

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I put it up on my Facebook page and asked for feedback.  Quite a few of my lovely female followers responded, with many of them commenting that it needed a closure of some description.  There were also comments on fabric, leather, colour etc, but I am not too concerned about those as simply making items with different combinations addresses that issue.  However I was concerned about the fastening issue, so I put a post on my personal Facebook profile, asking for input from males on the question of fasteners on wallets.  The first response was ‘No fastener for me. If you need one of those you’re not a man.’  And the following 40+ responses followed that pattern, except for one friend who responded that he had a fastener, then read the other comments and made various ‘manly’ statements to reclaim his manhood.  The respondents were of varied ages, educations, locations, backgrounds etc, so I think this is a fairly definitive indication that men do not like fasteners on their wallets!   I will tinker a bit with the design and hope to make some more this week, and will be sure to label the wallets as ‘man approved’ so that the women buying them don’t think they should have a fastener!

I also put out some feelers on whether people preferred baby bibs to fasten on the back or the side.  The responses were mixed, so I have decided for my next range of bibs to do a bit of both!  This was a custom order, but I plan to make a few more, and make some square ones with teether chews.

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I then had a great Saturday afternoon and produced a Kindle cover, shoulder bag, and library bag for my chicks (finally!!)

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The shoulder bag as a work in progress

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Kindle cover

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Library bag for the boy using the fabric he chose some weeks ago.

My steps forward were going well.  But I feel like I am going backwards this week.  The boy only managed to last 40 minutes at school today.  Last week he was there most days for between one and two hours, so I had some time to get things done.  This week, although we have only just started, I am feeling much more dejected about my ability to sew, to earn a living on my own terms, and to keep everything afloat.  I have finally decided to apply for some government benefits to help out.  While part of me feels grateful that the services are there, the other part of me is falling into a deep well of self pity wondering how I went from high-flying lawyer to government benefits.  Of course I know the logical answers – parenting a child with special needs means a change of course – but it is still sucking the energy out of me.    My mission this week, then, is that, in between filling out many, many, many forms, and organising my financial records for my tax return, I will find time to make things that are fun, and will re-energise me.

One of my ideas is to make a few more stencilled bags.  I made these two over the weekend as gifts, and enjoyed it, so a few more will be fun!

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I have also been playing with ideas for handwarmers and road tested a couple  with my boy and his friend yesterday – and received positive feedback from them, so will try to make a few more – sure to get me up and going!

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Right.  Here I go, off to get re-energized and move forward again!

 

Bibs, bibs, bibs!

I am very excited that I can finally announce that I have launched my new range of bibs for big kids and they are now available in my Etsy shop!  After falling into bib making earlier in the year, and making them to be sold on other websites and in shops, I have been itching to take the same idea and apply to bibs for older children, especially those with special needs, and oral sensory needs.  And I have done it!  (And I have also managed to finally list baby bibs in my online shop as well, so you can buy them direct from me as well!)

 OLYMPUS DIGITAL CAMERA OLYMPUS DIGITAL CAMERA OLYMPUS DIGITAL CAMERA  OLYMPUS DIGITAL CAMERA  Big kids bibs

Regular readers will know that I started making the baby bibs with a teething chew attached after a friend asked if I could design and make a bandana bib with a teething chew sewn in.  I agreed to give it a try, and after experimenting with different options (including walking around with wet bits of bamboo fabric on my shoulders to test their ability to hold moisture!) I came up with the design for a bandana style bib with an absorbent bamboo backing, and the teething chew sewn onto the end.  (I even worked out how to stop the sewing machines feed dogs from scratching the chew!)  They have been selling well in the Shop Handmade here in Canberra, and at markets and through a friend’s facebook page, but from the beginning I wanted to make them for older children.  This weekend the planets aligned, I had all the materials, the time and the will, and the first batch have been made.  (Can you tell I am a little bit excited!?!)

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 Little kids bibs

Having a child with special needs has introduced me to a whole new world of needs.  Although my boy doesn’t have a problem with dribble, he and one of his sisters both like to have something to chew on at times of anxiety.  With multiple holes in sleeves and collars I have discovered chewellery – plastic and or silicone jewellery that is designed for teething – or for kids with sensory needs.  It occurred to me that children who also have problems with controlling dribble or drool might also need something to chew on – so taking the teething bib to a new audience made sense.  I am also keen to make things that suit their age – because no 10 year old boy wants to be wearing teddy bears around his neck to make him stand out more than he already thinks he does.

Being able to combine my passion for sewing, fabric, research and children into one small accessory has been very rewarding.  Now to get the word out and let people know that they are available – and make some more!

Hmmmm…… other things that have happened in the nest over the last week or so……  we had rain.  Lots of rain.  The grass is long and high and in need of mowing…. soon.   Autumn weather is well and truly kicking in, with winter wardrobes starting to peek out piece by piece, and heaters occasionally being turned on to take the chill off the morning.

The chicks and I and some friends went to see The Lego Movie yesterday morning as a treat (promised since Christmas when it was advertised, and then we had to wait until April for it to be screened in Australia!).  We loved it!  I suspect that “everything is awesome” will be part of our everyday language for a long time.

I also started preparing for the workshop that I am running at the Mega Craft and Makers Day here in Canberra on Saturday (12 April).  Attendees at my workshop will make a freezer paper stencil and then paint their own design on a tote bag.  I thought that I needed a few examples to take along and show the group, so here are the two I made on Saturday.  I have about 100 more ideas to make, so will make a few more before Saturday!

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I hope that you have had a great weekend!

 

New directions

I was going to start this post with a lovely poetic piece about the rain.  But while I was writing it I had a phone call from the boy’s school.  Again.  His father is handling the situation, but the very fact of the call is enough to make me change my direction.  For the post, and for my/our life.

I have been on leave from work for some months now for a combination of reasons.  Trying to support a child with special needs, getting more and more worn down myself from constantly keeping all the balls in the air – working full time at a high level, being a full time single parent, the boy’s need for extra everything, the fact that the girls miss out on so much when the boy needs so much, keeping everyone fed, clothed, alive……  It all got too much at the end of last year and I fell apart.  So my leave (thank goodness I have worked as a public servant for so long) was needed to get me back to ‘normal’ (whatever that is) so that I could go back to juggling the balls again.

Except that I have realised that, as a wise woman I know says, ‘If nothing changes, then nothing changes.’  If I go back to juggling, I will fall again.  And next time I might not get back up.  Something needs to change.  The boy and his sisters won’t change.  They will always be my top priority.  Whether we live in this house or another, the same basic level of housework, maintenance, and general ‘home-ness’ will not change.  Although my ex-husband is back living in the same country, so I am not a full time single parent anymore, that change is not enough to balance it all out.  That leaves work – my paid employment and my creative business.  I am not yet sure what the answer is about which of these will need to change the most in order to build a new direction for me/us but it is obvious that one or both will need to.

I have applied for some further leave (of the long service type – again – so glad that I have worked for so many years!) so that I can work this question out.  Because life as a parent of a child with a disability can’t follow the plan that I previously had.  We have to find a new path, and a new approach, and a new plan.  This plan has to put my health near the top of the list of priorities, to allow flexibility so that the boy can have the support he needs when he needs it, to produce enough income to pay for the necessities in life, and to be manageable.  Expect to see a lot of idea bubbles floating around above my head, growing or popping as I work through all of them, weighing up, assessing and looking at how to build a new life for the chicks and I.  Although it is daunting, it is also exciting.  The possibilities are endless!

Meanwhile, back in the sewing studio (sounds posh doesn’t it?!) in between periods of intense chaos, some goods have been produced!  I have completed some custom orders, delivered a pile of bibs to restock the Handmade Shop (the first lot almost all sold out in under a month!!), and am ticking things off the list I made on the weekend.  This custom order was delivered today, in time for the birthday of a girl who loves Dr Who, and who loves the willow pattern.  I can’t wait to hear how she reacts to it on her birthday!

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And, after all my protests about bibs not being ‘in scope’ they are selling well, I like making them, and I have some plans to expand my ‘range’ for older children and teens.  Stand by for that development (once my new fabric order arrives!!).  In the meantime how gorgeous are these fabrics?

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Another thing that I ticked off my list this week was listing my new stock in my Etsy shop.  I was so busy making things in the lead up to the Markets at the beginning of the month that I didn’t stop and photograph many of them – a good lesson for the future!  Here is a small selection of the newly listed bags.

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And finally, my big news of the day is that I have been accepted to sell my bags through Shop Handmade!  This was part of the plan that I created last year, so I am proud that I have followed my plan, and that I have been accepted to sell in such a wonderful shop.  The biggest danger is that each time I deliver stock I will have to be careful not to leave with just as many pieces of other people’s work!

This week’s plan is to finish more custom orders, sew up some new designs, and get some planning happening!  I hope that your week goes well (and that you get the rain that is so badly needed if you are in Australia!)

For now I am off to think about new directions over a cup of tea.