Learning to be tomato

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I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.

When there is less like you

 

imageSeven year ago I started my journey of parenthood. It has been the most exhilarating, exhausting and enlightening journey ever. Over those years many have journeyed along with me but every year more of those people take a slightly different route. Every now and again I stop and look around, and while there are still many of you cheering me on, I notice as my children grow that there are less like me.

When my child was not speaking at aged one there were hundreds of others like me. That first birthday came and so many of us were yet to hear ‘mamma’ or ‘daddy’ and so we journeyed together for another year.

When the second birthday came along a lot of those children were now talking. It was beautiful. But some of us were still waiting. So we travelled on another year.

When the third birthday came I looked around to see some were crying happy tears as those precious words were beginning to come slowly. There were still others with me walking the path together of ‘is this autism’ or ‘should I be worried by now’ and we consoled ourselves together in our group. I wasn’t alone.

As we approached four I could hear some cheering us on. “This is the year” they would say, “Nursery will bring him on”, “he will soon get there!”. Hope carried me on as one by one more of my companions on my journey started to see their little ones develop and grow and finally speak.

There were less of us by now. The odds were not in our favour as much. Our children were starting school and still not speaking. This started to get serious and worrying and yet we continued to journey on supporting each other. As our special babies began school something changed. A few more, slowly but steadily, began to speak and the group became even less. As beautiful as these moments were it becomes more and more scary when there is less like you.

Still a few more trailed off by the time my child reached six. Therapists, teachers and parents rejoicing at little voices emerging years after they should. Miracles still happening.

And there we were, still waiting.

He is seven and a half now. And still not speaking. My true companions are few now and reality starts to settle in. Are we all here now for life? Is there still hope for us? Is there a time to say that the therapies are not working for our child? Our small group sub divides between those who have children using pictures to communicate and those who use sign language. Some are even managing both! We start to celebrate communication instead of language.

Then there is my son: Seven, no language, not using picture communication and only mastering three basic signs.

It is lonely here in my world. It really is hard to stay positive. It gets harder to find stories of children like mine. Sometimes it feels like we were forgotten. I admit it is heartbreaking when there is less like you..

But the longer we wait…the more of a miracle it becomes.

So we keep on waiting..even if we are left waiting alone.

Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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I am that mother

Today I have the honour of hosting my first EVER guest blog in celebration of Mother’s Day. Geraldine writes on her Facebook page It’s me Ethan and on her blog Geraldine Renton.

This blog originally appeared Here. Go check her out!

imageI am her.
I am that mother that you spy out in the shopping centre dragging a child kicking and screaming.
I am that mother that follows her son while he is running around the park or the playground; yes a helicopter mother- that’s me!
I am that mother that apologies after my son has pushed, kicked or hit your child. I do try to get to my son before he hits but sometimes I am simply not fast enough.
I am that mother that catches your eye because she is singing a nursery rhyme badly and loudly to a child who is trying to hit her.
I am that mother who has dropped to the floor in the middle of a queue in good ‘ol ‘Pennys’ and rocked her son.
I am that mother who has thrown her shopping bags, pushed past you and ran off screaming “ETHAN”.
I am that mother that looks tired…ALL THE TIME.
I am that mother that smiles at your little toddler while they are showcasing their tantrums for all to see.
I am that mother that stops to speak to your child, who happens to be clapping loudly sitting while in his wheelchair.
I am that mother that holds the door for you because the damn door will slam as you try to push your child’s buggy or wheelchair out of it.
I am that mother that picks up your bags because you had to give chase unexpectedly to a toddler who saw something shiny.
I am that mother who see’s your child is having a meltdown and not a tantrum; I’m the one who moves dangerous objects away, talks to your other kids and then disappears.
I am that mother who stares right back at you when you are discussing my child’s behaviours.
I am that mother that has thanked you for all your help; which amounts to staring and pointing, let’s not forget ‘tutting’.
I am that mother who never seems to be embarrassed when their child is throwing (what may appear to be to the untrained eye) a sh!t fit over a bag.

I am that mother that asks you “Can I help?” while your child is screaming, kicking, biting and your other children are just standing still, not knowing what to do, but knowing enough to stand back and to wait.
I am that mother that smiles at you and reminds you to “hang in there”; while your toddler is asking 50 questions, your other child begging for a new toy and your newborn crying.
I am that mother that smiles at your little family as you walk past mine.
I am that mother who is just like you; only different.
I am a mother to three wonderful boys.
Ethan introduced me to the world of ‘mother’.He is my eldest son, yet in our little world he is also my youngest.
Ethan has a syndrome that takes and takes; it will eventually take his life.
Ethan has shown me how easy it is to judge other people, especially parents. He has shown me ‘all may not be what it seems’ – he has shown me a perspective which I feel a lot of us, in our daily lives forget…
This Mother’s Day, remember every single mammy you see is doing her best.
Smile at each other,
Share a look that says ‘I’ve been there too’
Hold that door open,
Pick up the damn bag,
Smile through the tantrums/meltdowns that you see…
Afterall, we are all mothers, some of us are just a little different.

How do you respond when you hear your child has autism?

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How do you respond when you hear your child has autism?

We are all unique. It is what makes life interesting. Yet right from childhood we are expected to fit in and become the proverbial square peg in a square hole. We are programmed to react sad to bad news, excited and happy at good news and relief at hearing something is either not as bad as we thought or if it confirms what we have been expecting. As complex people we can even experience all that in just one go and often remain composed and professional on the outward appearance.

I have twice sat in rooms with various professionals and been told my child has autism.

How am I meant to respond?

Should I cry because my world has just turned my upside down; so many dreams I had for my child shattered as they have just been a life long diagnosis that could potentially limit them?
Should I sit in silence remaining composed while I am told all the deficits and difficulties my child has?
Should I look the person in the eye while they talk to me about their assessments that day and what other professionals have said about my child?
Or should I be relieved that my child just thinks a different way to others and count myself blessed he is just the same beautiful and loving child I brought in an hour before?

Am I wrong to keep my feeling to myself and keep the news confidential? What if I feel I want to share with immediate family only for support? Is it acceptable to update my social media with such news right away?

Should I ring a help line, search the Internet or immediate join a support group? Is there books I should real or pamphlets I take away with me?

What can I do about this? Should I be trying to change him or should I accept this? Should I be investigating private therapies or wait for further investigations or referrals?

What will this mean for my child’s education? Will this affect his health? Will he ever speak to me? What about the future?

While all this and so much more ran though my head on both occasions I heard myself thanking the person, shaking their hand and then finding my child to take them home.

I am never really sure if they expected me to cry. I wonder if they felt I was not hearing what they said. Maybe I even came across as uncaring or in denial? Would professionals have slated me for telling people, and even worse updating my social media that very day?

This week I heard more news on my children. Once again I found myself thanking the people concerned and shaking their hands. It seems the right thing to do. I have been programmed to be professional, not take up their time, and be dignified.

But we are all only human.

Never, ever let anyone tell you how you have to respond to that type of situations. It is ok to cry. It is ok to grieve. It is ok to retreat, tell the world and everything in-between. It is ok to feel trauma. It is ok to feel numb, or even relief.

Hearing your child has a life long condition with no cure is tough. Yes your child is still the most amazing, wonderful, beautiful child you took in to the clinic that day but things still change.

They change. You change.

However you respond when you hear your child has autism is the right way. There is no wrong way to respond. Even if you leave with a huge grin on your face dancing all the way home that is still ok. If it takes months of crying non-stop after the event that is also fine. You are all right. You are human.

In time how you feel changes. Then sometimes, like I had this week, you may have a co-morbid condition added on too. Then the whole emotional roller coaster can start all over again.

We are all unique. Your child is not a square peg but let me tell you something…you don’t have to be either. Be who you are. React how you react.

How do you respond when you hear your child has autism? There is no wrong way.