1) Trust:
The
biggest thing you need to look for is trust.
If the therapist works well with your child and he or she is making
progress, then you could be dealing with this person for a long time. You need to be able to talk with the therapist,
sharing any concerns you may have about your child’s progress, the therapy
program or your ability to do the therapy at home. If you’re not comfortable talking with the
therapist because you feel intimidated or shy, then that relationship is not
going to work. You are the expert on
your child and they are the experts in their field, together the two of you can
combine your expertise to create a program that works.
You
also have to be able to trust them with your child. Be aware of any gut-level concerns you
have. Your child may not be able to tell
you if they feel frightened or upset.
With a child with autism it can be very difficult to determine if a
tantrum is because of the autism or if the child is trying to tell you that he
or she is not comfortable with this person.
Again, you are the expert on your child.
Trust your gut and investigate any situation that bothers you.
There
have been well qualified therapists who I simply couldn’t work with. For whatever reason, there was a personality
conflict where we just rubbed one another the wrong way. In one case, a worker had been assigned by a
community group and I had to call and ask for someone else. I felt very embarrassed and guilty, thinking
that maybe the group would assume I was being difficult, or that I doubted the
therapist’s qualifications, or that bad feelings might end up jeopardizing my
son’s treatment. In the end, they were
very understanding and I got a worker who I was much more comfortable talking
with and who turned into a valuable source of information and help. In another situation, I had hired a
particular company and while they had all the right credentials on paper, in
practice they didn’t work well with my child.
I gave them a good chance, tried to talk to them, but it was as though
they were convinced that I didn’t know what I was talking about when it came to
my child. I found another company and
fired them. Don’t talk yourself into being
“nice” or not making a fuss. This is
your child and you have hired these people to help you. You should be treated with respect and
compassion.
I’ve
made an effort to sit in on just about every therapy session my children have
ever gone to. Not only is it a good
teaching opportunity for me to learn what the therapists are doing and how to
do the exercises properly, but it means that I know how the therapists interact
with my children and how my children interact with the therapist. I try to stay well back and strictly observe
rather than offering comments or prompting my child. In some cases, I’ve used a camera to remotely
view the session so that my child wasn’t distracted by my presence. Find a method that works for your schedule
and comfort level. As one US president
said: “Trust, but verify.”
2) Cost:
One thing that everyone can agree on is that autism therapies are expensive if you opt for private therapies. And there are usually huge delays and wait times if you have to rely on publicly offered therapies. It’s not uncommon for families to lose their retirement investments or home equity in an effort to fund their children’s therapy. While it can be tempting to just throw as much as you can at the problem, remember that this can be a marathon challenge. Your money and resources are going to have to stretch. Apply for grants and subsidies everywhere you can. My friends know not to ask me to do anything in March because I’m busy filling out a dozen or so application forms for the upcoming fiscal year.
The
money available is usually a limited pool and its important to make every
dollar count. If a therapy charges a
thousand dollars per session and another only one hundred, then consider how
effective you think the therapy will be and how many sessions are going to be
required. You’re the only one who can
make these decisions and they can certainly be overwhelming to consider. Again, trust your instincts. You know your child.
It’s
not uncommon to get caught up in chasing a “miracle cure” in treating your
child or to put your trust in an authority figure. If something works for you, that’s wonderful
and I wish you the best. But there are a
lot of companies making a lot of money off of parents’ desperation. Some of them have the best of intentions and
others are in it for the profit. We have
to give our son a liquid vitamin supplement because he can’t tolerate a
pill. A pharmacist offered us a “custom
blend” which we later discovered was effectively the same as an
over-the-counter option which was only a third of the price. If we had done our research, we would have
saved ourselves a lot of money which could have been put towards other
therapies. So do the research and weigh
the options before plunking down your cash.
3) Monitoring:
Another
idea for tracking how well your child is doing in his or her therapies is to do
a mini-evaluation every three months.
Progress is usually gradual and things can look like they’re standing
still if you check on them too often.
For example, I was concerned about my son’s aggressive behaviour, his
self-injury behaviour and his ability to communicate and I made myself a little
set of notes:
January: Speech: Average sentence 3-4 words, asks verbally
when prompted
Aggression:
15-20 incidents per day needing interventionSelf-injury: 10-15 head bangs per day
After
three months, I made another set of notes:
April: Speech: Average 3-4 words per sentence, asking verbally spontaneously.
Aggression: 5-10 incidents per day needing intervention
Self-injury: 10 - 15 head bangs per day
I still
do regular checks on both of my children.
It isn’t a huge amount of data to collect but it gives me a rough idea
of how they are progressing. In this
example, my son might not be using more complex sentences, but he was getting
the idea of asking for something verbally.
His aggression to others was going down but he was still injuring
himself regularly. That let me know that
our current program wasn’t addressing the needs that were making him bang his
head. You are going to have to monitor
how your child is doing, this can be a relatively painless way to do it. Other parents chose to write themselves a
letter detailing what their child was doing, or make a little video of their
children. If you can find a way that
fits in naturally with you and your lifestyle, then it’s one less stress to
have to worry about.
This
kind of monitoring can also give you a chance to go back and appreciate how far
your child has come. There are things
that we used to monitor that we don’t have to anymore. That can be a nice bit of encouragement and
we can all use that.
Privately-funded vs
Publicly-funded therapy:
If
you’re lucky, there is a government-funded autism therapy program in your
area. Most likely, there’s an extensive
wait-list for it. We had to wait over
two and a half years for our name to come up on the list for services in our
area. Luckily, we were able to send our
son to private therapy in the meantime.
Navigating
your way through the various groups and treatment options can be very
confusing. Parents who have already been
in the system are a great resource to help you figure things out. Some will have been happy with their services
and some will have been unhappy. But
they can tell you what to watch out for and how to make your way to get what
you want.
There’s
a big difference between how public and private therapy works. In private therapy, the therapist is hired by
you directly. Don’t like them? They’re gone.
In publicly-funded therapy, the client is the government (or in some
cases, a charity). The loss of total
control can be difficult for some parents.
Another difference is in the goal of the system. Publicly-funded therapy is aimed at helping
the children of the community. Private
therapy is aimed at each child in particular.
This may not seem like a big difference but it’s the biggest source of
conflict between public therapy and parents.
A lot
of parents dislike the public therapy system.
They complain that the system is too quick to dismiss children. Learn too quickly and you’re out. Learn too slowly and you’re out. Sometimes it seems as if the system penalizes
those who have tried to help their children with private therapy. To a point, this is true. Remember that the focus is on helping as many
children as they can. If a child is not
responding to the therapy, they want to offer that spot to a child who will
respond. If a child has reached his or
her therapy goals, then they need to move on to something else. If choosing between two children, one of whom
has had extensive help and the other who has not had any support, the system
will usually choose to help the one who has not had the opportunity.
Try to
remember that these decisions aren’t personal about you or your child. Gripes from disappointed parents can taint
your experience in therapy. I know parents
who decided not to listen to the therapists in the public program because they
thought the therapist was only trying to rush them through. In my opinion, they wasted a valuable
opportunity to get some help. The
therapists do want to help children, that’s usually why they became
therapists. The public system does have
its limitations and if you can accept and work within those limitations, then
you and your child can benefit.
Dealing with a
publicly-funded program:
I
recommend that every family sign up for public services. See what’s available in your area. Find out what the wait-list is and find a way
to remind yourself when your turn is coming up.
If you have to send away paperwork, then confirm that it’s been received
and that your child’s name is actually on the list to wait for services. In the very worst case, when your turn comes
up, you’ll be disqualified. But if you
do qualify, then you can get a break from the financial burden of paying for
private therapy. That respite can make a
big difference for the family.
Try to
get everything you can from the public services you qualify for. If you have a few sessions with a speech
therapist, try to learn everything you can about how to help your child at
home. It’s an opportunity to bring up
situations that have you stumped about what to do and get new ideas of things
to try. More intensive programs often
ask for more direct parent involvement and may offer training sessions. Again, it’s a good opportunity to get
professional advice. Try to follow along
with the program’s requirements as much as possible. If there’s something you really disagree
with, be up front and clear about it. No
one should ever try to force you or your child into something that you’re not
comfortable with. But you shouldn’t let
doubts about effectiveness sabotage progress.
If you agree to do something, then do it as consistently as possible,
even if you don’t think it has a chance of working. If it doesn’t work, then you can try
something else with a clear conscience.
It’s almost impossible to predict what your child will respond to, so
it’s important to give things a fair try.
You
should still make sure that you trust and are comfortable with the therapists
who are working with your child. If you
have concerns about one, then bring it up with the supervisor. I’ve called up and explained that we had a
personality conflict with an assigned therapist on more than one occasion and
for the most part, there wasn’t a problem.
In the one case where they did have a problem with our request, we
actually ended up withdrawing our child from the program because of our
concerns. I think we made the right
decision. No matter who is funding the therapy,
it should still be a collaboration between the parents and the therapist to get
the best results for the child.
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