Often parents of children with special needs will feel like they bear the weight of the world on their shoulders. You have to make important decisions that will impact on your little one’s whole life, and you have to make them often and quickly. This is why building a great support team is so important. By surrounding yourself with reliable experts that know you and your child, you are setting them up for success.
There are other reasons, beyond expertise, why you might need some help. When you start researching your child’s special needs, there’s enough reading material to fill the entire library in Beauty and the Beast five times over. Most of it is complete rubbish. It still takes time to read it though.
Then there’s the hard slog of looking after your child – feeding issues, sleeping issues, the fact that they take so much longer to grow up. My son is two years and eight months old but he has the developmental level of a 15 month old. In terms of receptive language and communication skills he is a 6 month old. Day to day life can be extremely difficult.
And on top of that there is the fact that you need to do 25 hours or more of therapy every week. And you probably have other children that do not magically disappear or get a pause button just because you’re busy with this one at the moment. How do you do all this without cloning yourself at least twice?
You get help, of course.
It is true that parents will need to be super involved in their kids’ therapy. But that doesn’t mean that they have to do all of it. In fact a very experienced mother of a grown up son with autism told me that she wishes she’d done less herself and given over more to others. Six hours per week was her recommendation.
My husband and I just keep hiring people until we have time every day to spend half an hour together recharging. Well, not every day. And not always half an hour. It’s more of an aspiration really…but that is what we aim for.
We have a pretty great team at the moment. This morning, we actually got to cuddle for about ten minutes before he left for work! It took us about a year to get to this stage, but these are the steps we took:
Step 1: Decide on the Early Intervention
Decide on the early intervention method you will use as quickly as you can. I chose ABA therapy because it had the most established results, but also because I liked the look and feel of the Lizard Centre, where Michael gets his therapy. It also helps that they’re only 3 km away.
Whatever early intervention you choose, the recommendation is to do a lot of hours. Over 25 per week. I could not imagine being able to do over 25 hours per week of therapy all on my own, to the standard required. ABA therapy comes with lots of therapists who come to your home. Our provider assessed every aspect of Michael’s development and they told me what to work on, while of course always keeping in mind the particular concerns that I had.
However if ABA therapy is not right for you, there are many other promising therapies. Some of them unfortunately are not available in Australia. For a list of all therapies, have a look at the raising children network. You can also have a look at the article I wrote on choosing an early intervention method where I list the most established and promising therapies.
Step 2: Find The Best Experts
Some people I know do this step first. First they find an expert, then they ask them what early intervention method to use.
I don’t think this is a great idea. Every person you meet will have an opinion and their own prejudices on what works and what doesn’t. Ultimately you have your parenting style and you know your child best. At most you can ask your developmental paediatrician for recommendations. Our paediatrician gave us a list of good ‘basic experts’. A good ABA centre, a good occupational therapist, etc. Either way you should research the therapies yourself. Then choose the expert on that therapy or the provider. Don’t let the fact that you don’t like a particular therapist close off a whole type of therapy for you either. Think of all the morons that do your job and keep looking.
Make sure you are comfortable with the qualifications of the person you chose and their experience levels. They should be experienced, patient, positive and educated. They should never lose their temper or strike your child in any way. This should go without saying, but I’ve heard stories. You should get a good ‘feeling’ from them. You might also want to observe them at least briefly with other children that have been attending for a while. If they had good results with other kids, odds are they might do well with yours as well.
As a start your team should include a good GP, a developmental paediatrician, and a psychologist. There might also be a speech therapist or an occupational therapist. And any other experts in whatever other kind of therapy you need.
Very importantly, whomever you choose and whatever therapy you decide to use, they should be listening to you. The supervisor should always be asking you what you have observed about your child. If you have special concerns, these should be incorporated in the program. They should also have everything in writing. You should be able to measure your child’s progress over the years. Never trust someone that doesn’t regularly assess whether what they are doing actually works.
Step 3: Find some junior therapists for additional support
On Michael’s team, to help us with his 30 hours per week, we have four junior therapists (including my husband and myself). We are adding another two in the next few months, so that will bring the number up to six. Plus we have a senior therapist who sees him once a week and his supervisor who watches over us all.
Junior therapists are very valuable.
They are energetic, patient people who are worth their weight in gold. Usually they have had lots of experience with little kids, if not necessary with specifically ABA therapy (or whichever therapy you choose).
The best place to look is on university careers websites, which is free and very simple. I tend to advertise with UNSW, Sydney University, Macquarie and UTS since they are near us. I target specific disciplines such as physical sciences (occupational therapy etc), psychology, and speech therapy.
Therapists seem to have superhuman energy and patience. But they do keep insisting on being human beings with assignments, immune systems that occasionally fail, and social lives. So inconsiderate. If I want my therapists to be good at their job, they need to be rested, they need to have time off if they’re sick or have a lot of assignments due. I don’t want them to be sleep deprived or stressed.
Because of this I find it is better to have more therapists, doing about 6-9 hours per week each (two or three sessions). This means that Michael gets used to them (he has a total crush on all of them) but if they are out for holiday/sickness reasons, it doesn’t affect his hours too much.
Characteristics of a great therapist
The key things to look for? Obviously you want someone that loves being with small children. Ideally someone with experience in the therapy you are offering or with children with special needs. I find that often location and availability will be the big issues. Therapists need to be able to get to you at the time that your child is awake and willing to learn. They need to be flexible in case little one wakes up an hour early or is up half the night and then sleeps in. They will also ideally be able to follow instructions while being creative, very bright, good with kids, very calm and patient while being outgoing and energetic. Yes, this sounds impossible but it does exist.
I look for people that are interested in child development and want to take something away from this experience. University students are usually broke and also flexible with their schedules. Thanks to modern education they will be in university for six or more years (evil laugh). Plus many of them will have experience working in childcare or babysitting.
Also in my experience paying a few extra dollars per hour will make very little difference to your total therapy bill but can dramatically improve your pool of candidates.
Step 4: Train your therapists up
In ABA therapy there is a training method for junior therapists. They get trained up by the senior therapist and are always supervised by the supervisor.
Usually they will do a three day course on ABA therapy that looks a bit like this. They then spend about a month learning with your senior therapist and your child at the centre or at your house. They will in this time try to establish a relationship with your little one and learn what specific programs they are learning.
If you choose a different method of therapy the training for a therapist may be less obvious and established. Often they count on the parents doing much of it themselves.
I don’t see why you can’t get someone else trained up in a different type of therapy, though. I really think other than exceptional individuals (and I’ve met some) no one can do it themselves for the intensity and at the hours you can achieve with help. All you need to do is find someone willing (whether hiring a student interested in child development or roping in a relative) and send them to the ‘supervisor’ or ‘provider’ for a few sessions with your child. You can also give them some extra tutoring yourself.
Why It’s Important to Get Help
It is great to have someone else, with lots of energy and less sleepless nights, fill in for you. It gives you time to spend with your other kids and maybe even watch a crappy TV show (hello, Gilmore Girls). Junior therapists charge about $20-$25 an hour on weekdays and more on weekends. Many government funding schemes exist to help with the costs of therapy and you should find out what they are.
I have written before about why carers need to take care of themselves first. Building a support network for your child will mean you have time for luxuries like getting a haircut or brushing your teeth.
Last night, my son fell asleep at 9:30. He woke up at 11:30 screaming and was up for the next three and a half hours. I’m still not sure what caused him to wake up. Maybe he had a sore tummy. I gave him some dried apricots because this helps him. Maybe he had a slightly blocked nose. Any slight thing that might disturb him, will have him up for many hours.
Whatever the reason he fell back asleep at 2:45 and got up again at 6:30. If I did not have support, I would be completely useless today. I had a nap and I can go on with making dinner and even do some therapy this evening. Support is invaluable.
If you do intend to do the therapy yourself use your government funds to hire help in other areas. Have your meals out, get a cleaner, maybe a housekeeper that looks after your other kids and prepares dinner. You can’t do this alone.
I have written a post about accessing funding after an autism diagnosis but it only covers Australia. If you are from elsewhere there are more and more resources available for families these days so have a look.
Sample Ad For Therapists
This is a sample of the types of ads I run on university careers websites when I need to hire a new therapist for Michael:
Position available for an enthusiastic and reliable ABA (Applied Behaviour Analysis) therapist, to work with a 2-year-old boy with ASD, who takes part in an ABA home therapy program. The program is overseen by the Lizard Children’s Centre in (location of therapy centre) but you would be employed directly by the parents.
The successful applicant must be willing to complete the three day training course at the Lizard Centre (unless they have done ABA training before) and to have a working with children check. There will also be a few weeks of (paid) training with the child at the Lizard Centre on (day) at (time) where you will be introduced to the little boy’s particular programs.
Therapy hours are conducted at our home in (suburb)) at (time). We would require some flexibility due to the little one’s varying wake up times. We would need someone that is available for at least two mornings a week in addition to clinic sessions.
Also required to attend a clinic session every four weeks at the Lizard Centre (paid) (time and days of clinic sessions).
You will be joining a team including a supervisor and senior therapist based at the Lizard Centre, and three junior therapists.
This job would suit a student who is interested in working with small children, has a lot of enthusiasm and patience! A commitment of six months (minimum) is essential. Salary is $xx per hour on weekdays and $xx an hour on weekends or public holidays.
Please email resumes to (email address)