Hello beauties. How are you?

I am now on school holidays. The boys start their holidays this afternoon. 

This week I went to Parent night at Chai's school. I didn't realise until the next day when I was speaking to another student that parent night was sad. 

His teachers are lovely and they're all happy with his progress and how he's fitted in. One of them asked me what my aims are for him and I said that I just want him to get through high school. They said that he'll definitely be able to do that. They then went on to explain that high school now is not just about getting your TEE and that there are other options and pathways. They also told me that they didn't see uni in his future. I'm okay with that, it's not something I think he'd want to do. 

It wasn't until the next day as I was talking to the other parent that I realised how different his pathway is and how much more challenging it's going to be. Other parents wonder about what their child wants to do for a career, I wonder what job he's going to be capable of doing. Other parents plan for when their children will leave home, I wonder if he'll be able to live independently.

As he approaches puberty I see more and more signs that his diagnoses are affecting him more and it breaks my heart. I don't want life to be difficult for him yet I know that it will be. The planning that I need to do for his future is totally different to the planning I'll need to do for Eljay. 

 

We're not having much fun at the moment. Chai struggles with noises and different noises affect him at different times. Chewing is a constant, he struggles with the sound of people eating so never eats meals with us. 

 

At the moment Eljay and I are suffering with allergies. Eljay is particularly snuffly. It's driving Chai crazy. He can't stand the sound of Eljay breathing. I can't change the way Eljay breathes. You can't even imagine what it's like in our house at the moment. 

 

The boys sleep in the same room. Both of them refuse to move to the other room as it's at the other end of the house so away from us. Chai struggles to get to sleep, wakes up several times during the night and can't get back to sleep because Eljay is breathing. Earplugs don't help and nothing I've tried so far has helped Eljay's snuffliness.  

Poor Eljay is constantly upset because Chai's either yelling at him to stop breathing or waking him up by throwing things at him because he's breathing. Then they both end up in my room so I'm awake too. It is not fun. 

Chai's angry with me because I won't stop Eljay breathing, he knows it's allergies but thinks that I can get Eljay to breathe differently. I can't. Frustratingly you can't apply logic to sensory issues like this. Logically Chai knows that Eljay can't help being snuffly, but at the same time Chai can't help that it's driving him crazy. I separate them as much as I can, but that's only possible to a certain degree. 

As my journey of parenting my beautiful boys goes on it just gets harder and harder. I wish that we could go out and do fun things together but we can't. We all miss out on so much because they boys can't do things together. Even a simple trip to the beach is not a simple trip to the beach. 

 

One day things will get easier but I think that will be may years in the future. For now I'm just doing the best I can and hoping that they don't end up too messed up. 

 

The good news is that it's chocolate weekend! I hope you all have a wonderful time!