Autism

Journey to Autism Diagnosis – Part Two – Newborn days

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So our beautiful daughter was born. I felt great afterwards because I’d refused all drugs and so bounced out of bed to have a shower leaving Sean in charge!

Our baby girl wasn’t happy though. First nights with new babies are always rough. I had expected crying but I wasn’t ready for the ear splitting screaming she started. I stayed for the night in hospital as she was born just after midnight and she screamed the whole time except when I was feeding her.

I took her through to the nursery to ask for help from the midwives, as my eldest had cried but not like this. My instinct told me she was in pain. But the midwives just dismissed me saying that it just meant she was hungry. They were clearly busy and a crying baby isn’t unusual. I left hospital as soon as I could the next day.

When we got home though the screaming continued. Sean thought he was going to lose his hearing as it went on all day and all night. The midwife added it to the notes in her red book – ‘very high pitched cry’.

After weeks of this, with hardly any sleep, we were willing to try anything. The health visitors referred us to a consultant and we saw a chiropractor in the meantime. After four months with no change and feeling at the end of our resources we asked our church leaders to come and pray! She stopped screaming that day. The consultant and Chiropractor discharged us and I stopped going to the health visitor. I had lost faith that they knew any better than I did!

It’s worth mentioning here how hard it is to have a baby who cries all day. When you’re out and about and see a mother struggling with a crying baby, rather than offering suggestions, that she’s probably heard a thousand times, it’s so much more helpful to remind her she’s doing a good job, to keep going and that it will get better. I had people think they could help and take her to try their techniques only for them to give up and pass her back. They could walk away but I was left feeling despondent and literally help-less. The best help we received were from friends who took my toddler or both kids so that I could sleep for an hour or so. Such a blessing.

During this beginning part of our journey I made all kinds of excuses for what was happening. First and most prominent was that I’d had a boy first time and so I didn’t understand girls, maybe this was normal. Or perhaps it was my fault because I was so tired all the time and maybe it wasn’t that bad.

You can see from this part of our story that early intervention was minimal and we were leading it with our need. We had no experience that told us maybe we should hold on to the help we were offered. The health visitors didn’t have any suggestions that indicated there could be something more going on beyond what we could see.

I still question today whether if I had pursued help whether some of her difficulties would be easier. This is a breadcrumb trail that leads no where, so if you’re on that trail, look up and walk away. You are the best parent for your child. Love them unconditionally on good days and bad, no matter how tough that is. It’s what will steady them in their own walk through life.

Journey to Autism Diagnosis – Part One – First days

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Over the next few posts I want to share our journey to diagnosis with our daughter. I’ve spoken to several parents who have been on this same journey and I thought it would be helpful to share the struggle we had and in some ways still have. We love our daughter and all her quirks as we love all our kids, my hope in sharing our journey is to offer hope to those in a similar situations.

Where do you start with a story like this? I’m going to take my cue for the first consultant we saw who understood, which took us 11 years to get, they want to start at pregnancy. Which felt like a long time ago, but as it’s where life begins, it’s where our story starts.

I fell pregnant shortly after surgery to remove my gall-bladder, when my eldest was just under a year old. I wasn’t fantastically healthy, even though I was slimmer than I’d been since I was a teenager! But we were super excited and keen to grow our family.

When I was at the beginning of the second trimester, my son got chicken pox and I got a mild case of shingles. Not ideal. We also had to move house when I was six months pregnant! Probably our worst ever house move!

After that though life was pretty straightforward, except that we had to get rid of our car. So when I went in to labour we had to wait for some friends to drive us to the hospital. Everyone assumed it would be another long labour but by the time I got to the hospital it was only 3 hours until she was born.

In comparison to my first that was fast! I think Sean was pretty traumatised by it and for weeks after he said he could still hear my screams! The midwife put in my notes that I was uncontrollable! Pretty funny now but not at the time!

Describing all that to a consultant 11 years later feels like a waste of time, but she added it to the notes. They need the full picture.

Next time I’ll write about those first few days. How all this starts with you questioning whether you’re just a bad mum who doesn’t know what she’s doing.

Routine is King!

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As we’ve had to throw out our usual routine due to self isolation, we have become again aware of how necessary routine is in our lives! Not just because we have a child with ASD but for everyone’s sanity!

I’ve mentioned before how, when I write, I’m a planner but it actually carries across most of life. I like some spontaneity, not too much though! One of the hardest birthdays was before I was married, Sean and my housemate organised a surprise party for me. I couldn’t enjoy the party because all my plans had been thrown out!

Sometimes I wonder how helpful being a planner is, but parenting a child with ASD has made it a gift. We reduce anxiety by creating a plan and where there is a change we ensure as much notice as possible, or we will warn if there is a possible change. It’s impossible to remove all anxiety from life and if we did we wouldn’t prepare our kids for the real world, but having some structure teaches them some disciplines for the future.

Things we do include writing out a meal plan. This helps as food is big in our home! It also helps with making a shopping list. I get the kids to give some input and if I’m making a meal I know they don’t like I’ll plan a pudding they love!

We like having guests to dinner so we plan certain evenings when they will come. I can then set expectations, letting them know if there will be kids they can play with or whether they will need to let the adults talk while they entertain themselves. (So you can imagine isolation has been tough! Every day the same question “Who’s coming for dinner?” Everyday the same answer “No one!”)

As we’re heading into school holidays I will make play dates and try to mix up who we see so that each of the kids has someone their age. We plan walks, garden days, beach days, baking days and maybe a TV day!

We have a ten day camping trip planned and the kids know each day there is the same! We may have a water fight one day, I take my oldest daughter to look around the charity shops and another day a BBQ. But everyday, there’s the park, the woods and a walk. (Every year we come home with stories and I’m sure at some point there will be a post with the funniest!)

So routine may be hard work to put together at times but I know that for our family it brings such a helpful structure and a sense of stability. Whether or not you have a child with additional needs, the boundaries and routines we set for them give them security. Don’t be a slave to your routine but at the same time if you don’t plan in fun it won’t happen! That includes cooking something interesting for dinner!

Autism Awareness Day

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I’m not sure whether you were aware but yesterday was Autism Awareness Day. I have a wonderful daughter with Autism and have a few friends who also have been diagnosed later in life.

Here’s a short summary of what it means to have Autism or be Neuro Diverse (ND). There is a wide spectrum of need and so there will be some ND’s who function on a day to day basis, whom you wouldn’t know are struggling to some who are non-verbal and everything in between.

Everyone’s brains are wired differently, someone with Autism has some connections missing or rerouted. Often those without Autism are referred to as Neuro-typical (NT), this helps as we are not calling Autism a disability but instead a difference in brain chemistry, or Neuro Diversity. ND’s are often among the most intelligent people in the world. Think of Steve Jobs, Bill Gates, Temple Grandin, Emily Dickerson and Albert Einstein to name just a few!

For our family having a child with Autism has enriched us. As is common for girls and women with Autism it has been a battle to get a diagnosis and an EHCP (I’m sure I’ll blog about our journey at some point!). But we know the fight was worth it as our daughter is now in a school that will cater to her needs and give her an education tailored to her. It was a shock to hear certain secondary schools in the area admit to not wanting to take her with her needs. As a society we need to do better.

There’s so much I could say about those with Autism and my admiration for them. To know how much they have to cope with on a daily basis to fit in with us NT’s. Wouldn’t it be interesting if instead of them fighting so hard to fit in with us, we worked harder to make life easier for ND’s.

I’d love to hear about your experience with Autism and answer any questions you may have.