Through the eyes of a stranger

Our favourite place 7am

This weekend has brought about the quiet realisation that my son is profoundly autistic and also has an intellectual disability. I, of course, have always known this in the back of my mind, however, it is not something that I have wanted to think about too deeply. Let's face it, there is always the hope that something miraculous will occur in order to make him more like his peers.

It is not going to happen. Nick will never be like his peers. Am I okay with this?

No, not really......

Whilst I accept Nick for the person that he is, I still mourn for the person that he could have been. 

I mourn the fact that I have to make provision for his future. I have to be prepared for all eventualities because as it goes, he will outlive me and who will look after him when I am gone?

Our favourite place 9am

On Friday we went to visit a residential facility that wasn't very far away from our favourite place. In fact we planned the visit to coincide with our weekend at the cottage.

As we drove into the grounds of the facility, we were immediately struck with the peacefulness of the surroundings. The Manager was a lovely woman who genuinely cares for the people who live there. She spent over an hour and a half with us, explaining how the facility was split up into areas of ability (gulp) and how the days were structured in order to be productive and meaningful for all.

We wandered around the grounds, visiting the different houses that catered for the residents. We were blown away with how happy everyone seemed and it was reassuring to see they were treated respectfully by the many staff. 

Nick was not happy and showed his stress by continually tapping my shoulder and saying "car". In all fairness, we were there for a long time and he was included in the walk and talk. **Woohoo, love that he can now say "CAR"**

Our favourite place 10am

It was hard not to observe Nick through the eyes of the Manager. From her perspective I could see my boy's limitations and his inability to integrate with the other residents. Through her eyes, I understood why she took us to the residence that looked after people who had high needs. Through her eyes, I understood why she placed particular emphasis on the fact that they did have residents that were low functioning (her words, not mine).

I observed the Manager watching Nick and taking note that his stress level was actually not that bad. Through her eyes, I understood that she would *consider* placing Nick on the waiting list. Through her eyes I saw Nick sit with the residents and to which she exclaimed, "oh, he does look to be social!"

However, through my eyes, we hit a snag. If Nick was to be placed there today, he would be unable to participate in any activity that is organised for the residents. He would be totally dependent on the adults around him. He is only able to communicate with those nearest and dearest to him. I can only but imagine how scary it would be for him to be left there without us. Yes, the facility is for intellectually disabled adults, however, Nick is autistic and the facility does not cater for autism, although they were quick to say that many of the residents had autistic tendencies. 

Regardless of the fact that they don't know autism like I do, I will still be applying for a place for Nick. It is my Plan B as I have to ensure that all my bases are covered. If he is accepted onto the waiting list, I have at least 10 years to work on Plan A.

Our favourite place 12 noon

There you have it. A few reflections on the reality of our life!! :-)

Hopeful Parents ~ What if?

Where to start?

I suppose the easiest thing to do would be to jump in feet first and blurt it out.......

I am going to visit a residential home for my teen. 

Damn, writing that sentence hurt far more than I thought it would.

If you have been following my Hopeful Parents posts, then you will be aware that a close friend of mine was involved in a tragic accident and she has been left with a severe head injury. She is no longer capable of caring for her 15 year old daughter who has special needs.

This has been a big wake up call for me and I have been asking myself the question, "what if anything happens to me and/or my husband?" It is a worry.

I realise that most of us don't even want to think so far into the future, however, as I am discovering, the future arrives very quickly. My son turns 14 this month. If he was walking a typical developmental path, he would be leaving home in just under 5 years!

As it stands today, my son will never be independent and will always need life long care. 

Scary thought, hey?

In my country, there is very little in the way of residential facilities for adults on the spectrum. In fact there is nothing in our province. The home that I am going to be visiting caters for adults with Down Syndrome and Cerebal Palsy.  It has a good reputation, although I don't actually know much about what life is like for those living there.

Do I want to put my son into a residential home? Of course not! I am happy for him to live with me forever. However, remember that my forever is not his forever.... and again, what will happen to him if he was to lose us. Circumstances change at the flip of a switch.

This home has a waiting list of 7 to 10 years, perhaps longer (and this is for the first person on the list!!). The cut off age for entry is 31. All that is needed at this stage is to place my son's name on that list..... just in case!

Will they turn my son away because of his autism? Well, that remains to be seen!

I will be visiting the facility with one thing in mind...... 

Is this residential home the right place for my son?



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* This post was written for Hopeful Parents