One year on

On the 27th July, 2010 I took E for a hearing test. His speech was severely delayed so we needed to rule in or out any hearing issues that he had. The test was clear. A simple hearing test quickly became one of the biggest turning points in our life.


The audiologist saw something in E, that no other medical professional had noticed up to this point. The test was undoubtedly traumatic for E, but it was E's disengagement which prompted his encouragement to have him assessed.


No, surely not. My child just doesn't like new environments. He only spent 10min with him, he's jumping to conclusions... What if? What if? A lot of stuff might start making sense... home to Dr Google.

As I read and read and read, things became clearer. What we thought was E's special personality were indeed traits of autism. And so the rollercoaster of medical appointments and emotion began.

Life, one year ago, was very different to how it is now. God showed me this very clearly today. I was at Kid's Gym ( a supported playgroup - run by an OT and physio and is quite structured) and there was a new lady there with her son and a 3 month old baby. Her son was having a major meltdown. He was kicking and screaming and biting. She was sitting on the floor with him trying to restrain him. This went on for at least 20min. Then one of the staff members took over and gave her a break. She walked off to a corner of the room to see her baby. Her back was to the rest of us.


Before my experiences with E, I would have felt a bit sorry for her. But I wouldn't have understood what she just experienced and I am ashamed to say - I would have judged her for having an undisciplined and wild child. I wouldn't have approached her (at least regarding this topic)- I wouldn't know what to say. After all, I didn't want to embarrass her or reveal my own self righteousness.

Today was different. I felt empathy for her. This is how my child behaved one year ago. He was extremely anxious in new environments. I know the feeling of embarrassment when my child has a meltdown. I know the heartache and frustration when you simply cannot communicate to them. The feeling of uselessness when you can't enter their world. The complete and utter mental, physical and emotional exhaustion that follows the meltdown. I know the tears that follow. Tears of frustration. Tears of helplessness. Tears of grief for your child.


So today I went to her as she isolated herself from the rest of us, put my arm around her and asked if she was alright. Reassured her that this was a safe place. I understand. I've been there. I still have days like this. I too, have cried my share of tears at Kid's Gym. But here I found support. Here I found people who have empathy. Who understand. Who do not blame the parent for the child's behaviour.


All of a sudden, on the anniversary of discovering E's autism, I realised I have grown. E is not the only one who is making progress. So is Mummy. Suddenly, I had something to offer this woman that I did not have before. As we talked about how we deal with our children's behaviour, I found myself offering information that one year ago I did not have. I realised I have learnt. I have changed in the way I deal with E's behaviour, in the strategies I use, in the way I express myself. But most of all, I have grown in compassion and empathy.

It's been so easy to feel like a failure in this journey. To feel like I constantly fall. I am weak. I get frustrated. I am slow when it comes to implementing things we learn in therapy. Yet God chose today to show me purpose in his ways.

I was comfortable in what would have once been an uncomfortable space.

And I had something to offer which I pray brought some hope and light and comfort into her life.

Dawning of a new day

It appears that a new day is dawning for us. For the last 2 weeks I have been saying 'I feel like a have a completely different child in the house.'

E is changing. E is growing. E is nearly 3 and a half. E's sunshine is starting to part the clouds. And its a breath of fresh air.

What's different about our little guy? The first major improvement has been in his language and communication. I don't know if it officially qualifies as a language 'explosion' but it is the most language we have heard from him. Ever. He is spontaneously putting two even sometimes three words together. He now understands some simple instructions and responds accordingly. There have been a number of times that I have had to pinch myself that E was really speaking these words and not his older brother.

E is playing differently. He is socialising more with other children and wanting to join in more with their play. The types of games he is playing with his brothers is changing. The other day they were throwing a balloon to each other and taking turns. I know this sounds like simple stuff but this is ground breaking for our little boy who would never engage in a turn taking game and would run off with the balloon not wanting to share it.

His independent play is developing. He is ACTUALLY PLAYING with toys for longer than a few minutes. He is accessing toys on his own and then playing with them. Toys which used to frustrate him (like magnetic trains on a train track), he is now enjoying and learning to resolve the problems. He used to get so frustrated when the trains would fall apart (because he would try and push about 8 trains), he would immediately throw a tantrum and we would have flying tracks and trains around the room. But now, when the trains fall apart he mostly attempts to fix them himself and keeps on playing.

All this has made a HUGE difference in my day. He is more settled, content and happy. Some days I felt like we went from one tantrum to the next. This is no longer the case. We still have some major meltdowns - and in some ways I feel like these are getting worse but they are not an everyday occurrence. The more minor meltdowns of a constantly unsettled, anxious child are no where near as present.

We still have our challenges. And I keep waiting for him to revert. Is this not all too good to be true?

Why the improvement? Is it because his autism is mild? As his brain matures, is he beginning to process the world like the rest of us do? Is he beginning to understand things which once brought him fear and anxiety? Is some of the effort and love poured into this little boy showing some fruit for the labour? Are his frustrations decreasing as his language increases? Is not all of the above the sheer mercy of God?

A major grief for me of late is that I don't really know my little boy. If I describe him, I end up describing traits of autism. I ask myself: What is here in this little boy that is him, just him? It's an unanswered question. I need to reach the point where I accept that autism and E will always be one and the same. I need to love and know him for who he is. But it's hard when all day long I just want the autism to go away.

My heart aches and my eyes well with tears as I feel like I might be getting a glimpse of who E might really be. I've longed to give him a name in this blog. I haven't like using a capital letter to represent him. But I've never felt like I could nickname him - I wanted to come up with something better, more endearing than Mr Tantrum. I haven't come up with one yet. But I feel one step closer.

Autism at the movies

E has never been to movie theatre. In fact neither has his older brother.

Cars 2 is arriving in the cinemas very very soon and another family has invited us to join them. They have 2 boys who like ours are very keen on Disney's Cars. We are very careful about what we let our boys watch. We try to preview any movies/ shows that our kids might be exposed to and assess whether we think it is approiate material for their stage in life (or at all).

We were very impressed with Disney's Cars. Apart from the subject material being highly attractive for boys (racing cars, trucks, what else is there in life?), we thought the story line, the values it promoted, the growth of the characters were not only entertaining but produced much material to think through and chat about with our boys.

We are not particularly fond of movies which promote a black and white mentality: where there is a 'goodie' and a 'baddie'. For this is not a true representation of life. We are not all 'good' or 'bad'. We are complex. Our lives are complex. 'Good' people do 'bad' things or foolish things. 'Bad' people have a story, a history, have been shaped my a multitude of life experiences and are still capable of doing 'good' things. We prefer to think in the categories of wisdom and foolishness. What does a wise life look like? How do we learn from our failures, our mistakes? What does growth look like? How can we contribute to the world around us from who we are and what we have been given?

Although, Cars does have an element of black and white (Chick for example is presented as the 'baddie'), we think for the most part, the shades of grey in life are highlighted. Lightening McQueen grows and changes, he starts off rude and selfish, and learns what it means to respect others and rely on others. Doc is another interesting character - is he the baddie or the goodie? Again, another examples of the complexities of our character.

We don't know what to expect when we take E into the movie theatre. If anyone has tips for us, we'd love to hear them. It is going to be very hard to explain to him what will happen, especially since there is quite a wait for the movie to start. We will have 2 adults, so if need be one of us can leave with E and the other stay with his older brother. We will be reading some reviews of the film to try and make sure the movie is going to be appropriate for them.

Here is a trailer of the upcoming movie. (And if I am honest, I am a little bit excited myself).

Siblings

photo from here

This is tough territory. It almost always makes me cry. Siblings of children with additional needs. It is sad that my oldest son, who is 5, has a better relationship and enjoys playing with his 18mth old brother than his 3 yr old brother. The other day his older brother, whom we'll call Tigger pushed E without provocation - and this is quite our of character for him.

When we talked about it later, I asked him if he was angry at E. He said 'I'm always angry at E'.

Why? 'Because he tantrums all the time and has a selfish heart.'

I was lost for words. I understood. He spoke the truth. E does seem to have an incredibly selfish heart. It's all about him and his needs. He has no concept of another's perspective. Sharing and turn taking is incredibly difficult for him. Tigger prefers to play with little bulldozer (18mth old destruction and into everything). Little bulldozer is not talking and yet Tigger said 'I understand him, I don't understand E.'

Even though little bulldozer isn't talking, he and Tigger are similar beings. They respond to stimuli the same way. His reactions are predictable. With E, they are always unpredictable. You never know how he will respond. He is 'edgy' and very hard to play with.

It breaks my heart that even little bulldozer has a greater affection for Tigger than with E. He gets excited about seeing Tigger. His eyes light up with joy. He 'talks' to him and engages him. Don't get me wrong, they do sometimes all play together and it is beautiful. I know Tigger loves E and he is very protective of him outside of the home. I am very grateful that Tigger has such a compassionate heart. He is patient with him and does try (sometimes).

I am so thankful to God that the boys have each other. I know these relationships will deepen as they grow. But they will always be filled with tension and pain. Knowing what will never fully be because of something called autism. How I long for the restoration and healing of humanity. To restore in E what sin and this fallen world has stripped him of. Come Lord Jesus, come.

10 things I love about E

This is a post to remind me what I love about my son. The days are often so hard, long and exhausting that I forget what I love about him. When most days are dominated by screams, tantrums, tears and aggressive behaviour, I need this list to help me find patience and see past all the negative.

1. His big beautiful belly laugh. It's rare but when it's heard it melts you.
2. His sweet curly/ shaggy hair.
3. His eye for detail. He sees the small things which most of us would miss.
4. His love of nature and outdoors. He generally finds this a settling and peaceful place.
5. His fascination with insects and bugs.
6. He is very affectionate with those that he is close to.
7. Our 'grrr' cuddles which we have before bedtime.
8. He enjoys music and dancing.
9. He can be very sweet and endearing - rare moments but beautiful ones.
10. He enjoys his relationships with his brothers. He often wants to be with them and play with them.

Listen to me

I think majority of people are deaf. I have come across few people in my life who know how to really listen. For a few it comes naturally, for most it takes work, an honest look at one's self and a constant focus on the other person. I am not a natural listener but I am trying to hone these skills, as being on the receiving end of not being listened to is at the least frustrating and at the most hurtful and could possibly lead to major complications and or set backs when it involves someone's health.

I started E in preschool last week. I was angry, hurt and very upset after leaving him. Some of that pain was the mere separation from a child whom I love so deeply. From a child who has walked a tough road and I have held his hand every step of the way and now I need to let go. From a child who cannot make his needs known easily. From a child who takes a long time to feel secure with someone new.

These deep, raw feelings of emotions were amplified by silly insensitivities by the staff towards me - that had they been 'listening' could have been completely avoided. I was fragile. I was vulnerable. I was sure others could see the massive lump in my throat. It is at these times we need to make the extra effort to make sure we are listening. The vulnerable don't need our platitudes. They don't need our brush offs. They don't need to know that you're the professional and you know what you are doing. They need to know you have heard them. Really heard them.

A few examples.

I had prepared a full A4 sheet of instructions about things specific to E. What he likes. What he doesn't like. What things will normally trigger a meltdown. What things he finds settling or comforting. What the few words he has sound like and what they mean. How he likes to eat his banana. Maybe to some this seems over the top. Maybe it is. I don't really care. My son cannot verbally or non verbally (not consistently anyway) express his needs, wants or frustrations. My son has certain issues/ sensitivites that typically developing children do not. So please, when I am working through the instructions with you, please don't say 'He'll be fine.' 'He'll settle in.' Don't give me the impression that you don't really need to read and understand this sheet with me. When I give you certain books and CD's that he enjoys and that are familiar to him, don't say 'Oh, we have lots of music and books here'. Yes, you do. That is not the point. These are familiar to him. As his mother, I need to know you have genuinely heard what I have said. I don't want the brush off. I don't want the impression you are telling me that I am the over the top mother who should just go away and let you get on with it. That is what will make me cry.

So when I finally leave and have tears welling because your staff were insensitive and I was vulnerable, please don't tell me 'He doesn't need to see you cry, you know.' Really? I didn't know that. I was planning on having a tantrum on the floor myself just to let him know how much this was upsetting me.

It's not easy. I know these teachers are greatly experienced with kids with special needs. That's why I am sending him there. I know they have a lot on their plate - maybe they give all their energy to the kids and they don't really have the time to deal with emotional parents. But I didn't think I asked much of them. I just wanted to be heard.

Remember this next time someone you know is doing it tough. Are you listening?

When things actually go right...

It's been awhile since I have posted. Life has been full and busy... will post more in the coming weeks.

Life with children rarely goes to plan... let alone life with a child with autism. Everything is so unpredictable. You are never sure what might cause a meltdown or anxiety in your child. Sometimes I feel like I am treading on eggshells all day - trying to meet his needs, preventing meltdowns, responding to meltdowns... the littlest thing can set him off.

My little E started preschool on Monday and had another full day yesterday. This was no small feat. E has always been very insecure outside of immediate family. He will not even stay at our neighbours place to play (even with his brothers present). He is very happy to come home with me. He seems so immature in many ways for a 3 year old. I knew that preschool was not an option for him. It was a must. It will form a major part of his early intervention. He needs to be in an environment away from me where he can learn social and language skills, learn how to behave and interact in a group context and for his general growth and development.

My expectation was that the transistion into preschool was going to be traumatic. That for the first few weeks I would only be leaving him for one or two hours at a time. That we would have major screaming and tantrums whenever I left him for weeks on end. That he would cry and scream and roll on the floor for ages after I left. None of this happened. The parting was hard and there were a few cries for 'mummy' and tears. But nothing overly dramatic or traumatic. (My tears were mainly caused by the interaction I had with the staff -but that's another post).

According to the teachers, he settled in quite quickly and was easy. He just went with the flow. Happily followed what other children were doing. He ate all his food (always a good sign). He engaged in activities that he has never done before. He sits on the floor and listens to a story - HE HAS NEVER DONE THIS! He doesn't 'do' group activities. I don't think the teachers understood just how mammoth this is and it warms my heart and brings tears of joy to my eyes.

We had prepared him with a social story of E going to preschool. I had photos of the preschool and his teachers and different activities he can do at preschool. He engaged with the story quite well. He learnt to say 'preschool' which I found comforting. However, I think the most helpful thing in his smooth transistion was the fact that he has watched his older brother go to preschool and be picked up at the end of the day. He has now watched him start school this year. He knows the routine. We have sent him to the same preschool that his older brother went to. This too, was instrumental in his ease of passage. It was familiar. The photos in the social story were familiar. The play equipment was familiar. He knew what he was seeing.

We'll see how next week goes but I am very hopeful for a real positive experience between E and preschool. It's a rare moment but its heartening when things actually go right. I can only thank my friend Jesus for holding my hand and E's in this massive process. He is the faithful friend.