Reflections

I said right at the beginning that this blog was an attempt to carve out some time for reflection, but I've not done an awful lot of that yet. Perhaps I'm afraid to bore anyone who might be reading. {g} Perhaps I'm afraid to disappoint anyone who may be thinking I have a great life! Perhaps I'm just nervous about exposing myself. But the last few days have been tough and I need to try to figure out what has been happening and try 'bring my thoughts captive' before they run away with me.

Jamie and I have been trying to come to terms with our daughter's diagnosis with High Functioning Autstic Spectrum Disorder since June. I keep thinking that we should be over the shock and devastation stage of the adjustment process by now. Certainly many of our friends seem to expect us to have done. So, why aren't we?

I feel like a woman with a 5 month old baby with Down Syndrome might. I feel the same as though a midwife had told me 5 months ago that my beloved, long-anticipated baby had Downs. I think. Obviously, I've never *had* that experience and I know that Downs is different because of all the accompanying health challenges: heart defects, vulnerability to lung infections, increased likelihood of leukemia etc etc. So, on this level, it is not a perfect analogy. On the other hand, I am reading the research which shows that the following are usually (usually!!!) 'co-morbid' in teenage girls with autism : self-harm; anorexia; bi-polar disease; ADHD; epilepsy; depression; suicidal tendency and on and on.

Reading this means we have to be aware that although Grace does not, by the Grace of God, have any other of these conditions right now (probably, we are assured, because we pulled her out of school), she is *vulnerable* in a real way and to a degree that most other teenage girls are not.

Her social vulnerability is evidenced daily. She cannot be left alone. I need to supervise her 24 hours a day or she is not safe. She cannot lie or dissemble to protect herself from people who might wish to take advantage of her. She has few self-advocacy skills and those she has, she can only use inside the family. She longs to make friends but has not been able to learn many friendship skills or use the few skills she has because of her social anxiety. She is becoming increasingly isolated from her peers.

And this is just the ASD side of her problems. It does not begin to touch her learning difficulties which present her with a whole other set of challenges. And the combination of the two heightens the effect of both.

Our friends' reactions to the news about Grace's dx were, on the whole, odd. Most people, who did not know Grace well, reacted with detached amazement, scepticism. 'She looks fine to me!' Others, who knew her better, and already suspected *something* was up, were surprised by our shock. One close friend said, 'But you already knew that she probably had ASD, didn't you?' Yes, we suspected, but what we had not been prepared for was the bleak prognosis for the rest of her life. So, when I said we were devastated, that was what we were reacting to, not the label itself. My friend W, was an exception. Her reaction was the deep sympathy and understanding for which I longed and, (uniquely) prayer, right there on the phone, whilst I sobbed.

I'm STILL sobbing though. I woke up yesterday with a real panic attack. I'd begun to worry again about her future -What about when we die? What if Jamie and I and Jack all died in a car crash, there would be no one, no one who would love her and care for her! We have no family interested in us and asking a friend to take on possibly life-long guardianship for an adult with ASD isn't really the kind of thing you can do. So my breathing went wrong, I started to feel light-headed, my fingers started to tingle, I felt sick, all the familiar symptoms of an attack. So I got up and found Jamie, who still has to sleep on the sofa, in a propped position, because of his back-pain and I cried on his shoulder. It was 5.00 in the morning. That's my usual waking time these days.

Jamie has a much better attitude than me. He is utterly convinced that God has prepared a wonderful future for Grace, including some very special man who will love Grace and want to marry her (her heart's desire). So, he's confident. Confident in spite of what the Neuro-psychologist has told us. He's also confident in me as her mother and educator. However, I can't help feeling that his confidence is not well-founded and that whilst I am still feeling devastated it is because *I've* accepted the truth and he has not. Time will tell who's right, I suppose.

The first few months after diagnosis and prognosis, complicated by the other events of the summer which were so hard, had me grieving for Grace, the loss of the future we'd hoped of for her, the reality of a future so vulnerable, of dependence, isolation, probable unemployment, possible mental health problems and so on.

While I am still concerned about those, an *additional* layer of anxiety has recently gripped me. Financial insecurity. Jamie and I took on this huge (for us) mortgage on the understanding that as soon as the children were up and out on their own, I'd be able to go back to work and start to pay the mortgage off more quickly. Currently, we are due to have paid it off when I am 72 years old. We were hoping to be able to pay it down before then. {g} We NEED to have it paid off so that Grace will have some money after we die, for somewhere of her own to live. Managing to pay the mortgage each month is VITAL now that we understand about Grace's disability. It's not just a nice thing if we can afford it, we HAVE to afford it.

But we've really struggled recently. Jamie has taken on more hours at work and some shift work and on-call phone support for the company's customers. I don't know how this will affect our family life, but we need to do it. I'm trying to run the books business, but home-schooling makes it difficult to contemplate anything else right now. Since we started home-educating 10 years ago, it was always on the assumption that I was deferring returning to work until the children did not need me any more.

Now, it is looking like that phase of my life will never actually come.

The circumstances which have prompted this present round of anxious reflection and renewed grief is that we are currently applying for both a carer's allowance and a mobility allowance from the state. Even though these are most likely to be given and are non-means tested, I hate having to do it. I hate being dependent on the state for disability benefits for my child. Even though we need any extra money we can get, it's painful admitting that need and a brutal business, listing Grace's deficiencies on paper for a stranger to see and dispassionately assess.{sigh} I need to get over that, I guess.

So, this blog entry is an effort to record another part of the process of coming to terms with Grace's condition. It's not all a smooth upward path on a graph. The last few days have been very tough on me. But I need to record the 'warts and all' version of this process, the joy and the grief, the peace and the anxiety.

Because, if I don't then it is not a true record. And truth is good, right?

Strengthen the feeble hands,
steady the knees that give way;
say to those with fearful hearts,
Be strong do not fear;
your God will come,
he will come with vengeance;
with divine retribution
he will come to save you.
Isaiah 35, 3-4