Well, after 4 years of her suffering with encopresis we may finally be on the road to recovery. I had the clarity of mind and strength to make an appointment with a doctor - I wasn't picky who, to try and get some medication that I had researched, and a referral to a paediatrician.

The medication wasn't forth-coming but the referral was, albeit for the encopresis and not the sensory processing disorders. So we buckled in for the 3-6 month wait which turned out only to be 5 weeks.

We saw a peadiatric registrar (someone not certified yet but apparently done all the study and still under supervision) and thankfully this was a female. I am so sick of condescending arrogant male physicians who believe themselves to be gods.

The doctor still has room for learning not to ask leading questions but other than that she agreed with my diagnosis and chosen treatment; making a return appointment for later that week to collect the special script - that is an altogether different story that I won't bore you with.

So here we are 2+ weeks later and working on regulating (downwards) the amount of medication Agate has to take. It is not going to be a quick fix and may take a year, but we have made a start.

In all of this I am angry. Angry that Agate fell through the cracks of the 'health' system despite me raising it with our family doctor 4 years ago. Angry at the child health service that we saw at least twice, angry at the parent educators support scheme that didn't seem to hear that I wanted help, angry at the family therapist that simply advised that if we follow her method the problem would be solved (perhaps most things work for most people, but lady we aren't 'most people').

And the line up wouldn't be complete without discussing how I feel about God's hand in this. Disappointed probably would be the best description. When children are depicted in the bible as so dear to Him, and we all know how very malleable and impressionable they are - why did he not protect dear Agate from the gut-wrenching attack on her self-esteem that now is deeply ingrained? Could He not see how much she has missed out on due to not being able to go out with her, let alone how much our family has missed out on for the very same reason? Why, when we sought a solution 4 years ago did He not make sure that we got what we needed and asked for - does it not say "Ask, and you shall receive"?

Before you think of letting me know that God will use all this to make something beautiful, I don't believe that anymore. The reality is that the last 4 years have been incredibly hard. That Agate's encopresis may well have been the root of her oppositional defiance disorder which has affected our family more than I care to think about. She almost led to our divorce, except that I have to give 'religion' kudos there for making me so blindly stubborn to believe that marriage is for life - just to clarify: she wasn't the reason but her condition was the catalyst for much strife.

God could have stepped in and made sure that Agate was treated, which would mean that she would not have developed such a defeatist, degrading, oppositional attitude. Our family cohesion would have been so much stronger as we could have worked on bonding and all the positive stuff instead of struggling to even cope with one single child and her behaviour and condition. Agate robbed the other children of as close a relationship that they would have had with us as parents and of opportunities to participate outside the family home.

I know that believing in God is not promised to be a bed of roses, but when you hear stories of parting vast bodies of water and raising people from the dead, is it not too much to ask that someone listen to a mother's cries and help as they have been trained to do?

I do not know what will become of Agate. I do not know if this is the beginning of a better future for our family. I do not know how healing of the hurts we have all felt, will come. I do not know how I can tell someone else that God's hand was in all of this. And yet there is still part of me that continues to believe in God no matter what - what is that?

Its time to bring you up to date with some of the post stories ...

3 Months to Live
The friend who was given 3 months to live is still with us, albeit quite depressed as she enters 2009 as I presume the inevitability of this year being her last wraps itself around her thoughts. She has had to move 3 times, and was burgled 3 times at the first property. Now her landlady has passed on and the family strongly wanted to sell the rental property.


Behavioral Optometry

We did get a second opinion for Agate and for her age she is doing well. I wanted to focus on her visual-spatial skills and so a couple of take-home exercises were prescribed by the Optometrist.

We will test her again after a year to get a better idea.


Agate

I have written a few posts about Agate and the various areas I have tried to explore to help me understand her and help her.

I now tend to believe what I have read - that ASD disorders may be a 3 year delay in neurological functions reaching maturity, as she has improved significantly. In fact I would be loathe to say she has ODD but rather some strong-willed reactions to her SPD and encopresis.

The later is the area that we have made little headway. So we are now in the middle of waiting for some laboratory tests results to come back to see if they give us / the doctor any insights. I really wanted to save her from blood tests but looking at the bigger picture - she needs to have a solution to this problem for her own well-being.

Already her eosinophils have come back very high but the coeliac and stool samples have yet to be completed.

She exhibits none of the typical coeliac symptoms and her serum immunoglobulins (IgA, IgG and IgM) are normal.

Anyway last year we decided to try a gluten free diet once more. OH BOY, what did we get ourselves in for?! It made the household awful, horrible & tense all over again. All those things that has slowly slipped into oblivion. So perhaps there is something to it?

Why did we try gluten free? Well when we had been away on holiday it was noticed that Agate did not soil herself, and that when offered a range of foods from which to graze she had been choosing mainly fruits, vegetables and a little meat. Instinctively (if that is what it is) she had been avoiding breads and cereals. Which is what made me think there may really be something to this, as the first time that Onyx, Ruby and Agate did the FAILSAFE diet they all reacted to the gluten challenge too. Except Onyx didn't want to do anything about it. From memory the older two stated that their memory was clearer.

Having to only source enough alternative food for one person made this easier this time and she seemed to understand and most times appreciate that she is being singled out for this snack or treat that is different.

We now hopefully also have a pediatric referral in the pipeline - expected waiting time = 3-6 months.


Weight Loss

Well, you wouldn't believe it but after 8 years my scales went belly up! Probably a result of the children jumping on them one too many times. I tried to get replacement parts but they simply do not stock any. I was on the verge of being resigned to buying another when the agent went on to say that as they were Salter scales they have a decent warranty on them and they would replace them with the same or a like model. So they have been sent back and I tentatively await the new ones.

I really don't want to try them out as I am in flux between wondering if I am simply just fat from the Christmas season or pregnant! Of course the later is almost impossible but would be easier to live with than thinking that all my effort last year to lose weight has been undone. I am seriously looking at exercise equipment - sigh.


Well folks, I hope that fills in some of the blanks.

If you are wondering about something I haven't updated on recently just drop me an email and ask! =>

Thursday saw me haul Agate and the rest of the children off to her optometry appointment, getting the boys up early from their afternoon nap.

Mistake number 1

I had arranged for Onyx to look after the others but a work emergency saw him in another town 20 minutes away and without transport. Just great!

I was affronted by one of the assistants about the children being there, then again by the optometrist, wondering why I appeared stressed, at which point I burst forth to let him know that I didn't like being told that it was no good for my other children to be there and if I had a choice they wouldn't be; and then ended up sitting in the waiting area with the boys while Ruby stayed with Agate (for her personal safety) for the exam.

The 'play' area consisted of a low tray in the corner with a few toys adjacent to two exposed power points. Down the other end of the inward facing rows of chairs was a water dispenser at the right height for little ones to play at.

That wasn't the only thing though. I had wanted a behavioural optometry appointment - skip to the real stuff, but had been told that they would only do a physical vision check. I challenged the optometrist and not being in there I didn't know what he had done. We were invited back in for a condescending lesson on his whiteboard and told the cost of the consult which was more than 3 times what I was originally advised for the straight-forward vision test. So he must have done more?

He offered oh so generously to have us either come back in 6 months time for re-testing or every fortnight for a programme of exercises (that of course only he could do and he wasn't telling us what they were!).

Today we got a letter with some brief details in it but I wouldn't call it a report. No numbers, no specific information.

It appears that Agate has impaired vision - she can only see to the third from bottom line on the vision check. She also has mild long-sightedness, impaired balance and visual acuity (Streff's syndrome).

Comparing this to the SPD checklist I did for her the other day, the vestibular problems 'fit' but I was not aware that she had a physical vision problem.

Part of me wants to jump ahead to giving glasses a go but I do know that there are exercises that may be done to improve eyesight so I should look at those first.

Perhaps the visual problems are the root of her sensory processing disorder and that in turn has contributed to the ODD? If she didn't have the problem would the ODD simply up and leave?

Today a friend delivered a couple of moon-hoppers in the hope that these will help with Agate's balance. Her other suggestions were a balancing beam, trampoline (must get the mat re-sewn), skipping, roly-poly, tire-jumping, rolling down a slope and a houla hoop - anything that gets Agate balancing or crossing her mid-line. All good ideas and I guess what a child her age ought to be out playing with.

Maybe Onyx can grab some old tires from the auto mechanics when he drops the van in for a warrant next week and we can start to set up an obstacle course in the back yard? We have the balance beam (a garden seat). The trampoline mat can be fixed. The houla hoop fixed and the skipping ropes reclaimed from under the debris in her bedroom. That sounds like a plan.

Now off to find something on Streff's syndrome. My first web quest wasn't that successful.