Stranded in Motherhood: The dilemmas of running a home autism program

And that's me pretty much. These days anyway.

I am in a place of overwhelmedness with regards to how to help Khaled.

The great betrayal

Since the last months of pregnancy, Khaled has definitely picked up on the distance between me and him. In the beginning he tried to be adamant about having me around on trips with his dad and clinging to me when the Therapists were here, but he sort of gave up.

We have now entered a strange phase in our relationship where the trust between us has deteriorated significantly.

We have betrayed him by having a baby pretty much. Regular kids too go through this period of loss of trust and uncertainty after a new baby arrives BUT let me tell you, no in fact let me challenge you, to try and and earn the trust of an autistic child.

Khaled had a really hard time adjusting to the new baby. He can kind of tune out her crying, but even the few minutes I get with him during the day alone, (some days not even those!) are almost always interrupted and as soon as he hears that teeny scream of the baby, he has this look on his face which says he understands that whatever was going on is now over.

Unlike typical children he cannot find a way to engage with the new addition. He tries really hard though to make sense of it all, and I try to find roles for him in the baby stuff like bath time and diaper change etc, but at the end of the day we have a super clingy baby who will not be left anywhere for even a second and an attention deprived Khaled sort of giving up on his relationship with me.

If I try to join him he escapes. If I so much as stand next to him while he is looking out the window he escapes.

So I am kind of stuck trying to find days I can just take him out and walk around, pack picnics or such. But the weather has been specially unkind so far and since April we have had a non-stop cycle of viruses.

Khaled's therapies and therapists are another story altogether. On the face of it we have the best people working with us, but I am relying heavily on them due to the demands other things are making on my time like the baby and just basic stuff like making lunch or taking a bath!

It is painful for me to stand there and watch a session taking place where the therapist is making all the classical mistakes and I can do nothing but retreat to the other room with the baby and just stick my head in the sand.

I hate it. So much.

My husband does keep reminding me that it is a small phase in our lives that will soon get better. I am not of the opinion however that things just get better magically on their own. Kids with autism don't just magically learn to cope with things without the right supports in place. But I need help and I have help, its just not the right kind of help. Everyone makes such grave mistakes when dealing with Khaled and they just don't see it.

Such as:

Over prompting
Focusing on the activity too much
mindlessness
relying on tangible reinforcement too much
Doing activities that may be cognitively within his grasp but are far and BEYOND his regulatory capabilities.
Not enough communication between team members
Too many team members
Inflexible session timings

And they don't even realize it. Somethings people just take as the norm, because that's life, like inflexible session timings. Therapists have other clients, they can't just flip things around to suit the child's needs. Which is in itself contradictory to their purpose for being there in the first place.

Every day is like a series of steps to get to the end of the day. And its starts all over again the next day.

I don't know what to do. I am just failing him and there are no solutions except just wait and wait and see.

And this is all after we have a good team with good knowledgeable people!

Ideal situation

I fire everyone
Move in to a house with a yard
Hire one nanny
Get my life back on track with Khaled

Its so tempting. But we can't right now (or can we?)

Khaled will start getting funded from July. The anti-autism, anti-child, anti-family, autism funding program offered by the government of Ontario, requires that we have a 20-25 hour per week program for the child. That there must be a Psychologist overseeing it. A clinical supervisor and a bunch of therapists. There must be table work and there must be certain targets that must be met.

There is no other way that the government will support my family's needs. I feel cheap. Like I am letting Khaled down so we can get some financial assistance.

Give or take I give it 18 months to 2 years before the government kick him out of the program. That is their budget and it is a system based very much on economics and not on individual needs.

In an ideal world, the government would give us a big tax relief every year, or a small lump sum that we could spend any way we liked to help our son. That's not happening of course.

Perhaps until then all I can do is keep my head stuck in the sand? Because there isn't much else I can do.

Source: http://www.strandedmom.com/2011/05/dilemmas-of-running-home-autism-program.html

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