Being an autism parent is, well, one of those jobs that never ends, and has new surprises daily. You can imagine having a child in your house who has greater needs than any other of your children, some of which you are not able to meet!
Coming up are the highlights of an autism parent’s journey.
You, the parent, decide to visit the pediatrician because you have a feeling that all is not well. You get there, and suddenly the pediatrician begins to ask you all sorts of information-gathering questions that you previously deemed irrelevant. After the whole question and answer session is over, the pediatrician drops the bombshell – your child has autism, there is no cure for autism, etc.
At this point, all your hopes and dreams are shattered. All the visions you had of your child being top of the class, or being the most sociable or talented in the class go down the drain. How devastating!
Once you get the diagnosis and head back home, reality sinks in – your child has a disability called autism, and it will never go away! For any parent, this news is enough to drive them over the edge! As you begin to think about all the wonderful plans you had for your child, grief sets in and the tears begin to flow. For many parents, this stage is the most difficult, but once they get through it, they are able to move on to the next step of the journey, acceptance.
Just to note – many parents do not get counseling at this stage, yet they desperately need it!
Autism does not hide itself – it wants to be seen by everyone, even those who are not interested! Getting a diagnosis makes this just a little bit harder because the parent now begins to note the characteristics of autism as pointed out by the doctor. Stimming, speech delays, meltdowns, and obsessive behavior suddenly become more obvious. In fact, most parents, once they are made aware of what autism really is, want to hide their children away from the world.
How do you accept autism? How do you let it into your life? Simple – accept your child as a unique individual, and embrace autism as part of that uniqueness. Also, don’t ‘force’ yourself into acceptance. Read up on autistic adults, and find out how they coped through their childhood, teen years and adulthood. If there is a support group near you, become part of it and share your joys and sorrows with other autism parents.
The acceptance season is the hardest one to get through, but the most rewarding, as you get to see the unique beauty in your child, and the gifts that he or she has been created with.
Remember what you were told after the diagnosis, that you need to start intervention as soon as possible? Well, most parents get to this stage and panic, much to the delight of people out there who offer all kinds of interventions.
First, what interventions are required for autism? The most commonly available interventions are Occupational Therapy, Speech Therapy, and Behavior Modification. Most professionals who are trained in these three areas will have a good idea about what a child with autism needs. But here is the catch – children with autism are different, and as such, the therapist will need to adapt each intervention to the child’s needs.
Parents have lost a lot of money to therapists who claim to know what they are doing, while they actually have no clue what they should do or use a one size fits all approach. It is therefore important for you, the parent, to do your research and find out where you can get quality tailor-made interventions for your child, from fully qualified professionals. Read up on these interventions, identify who the authorities in the different fields of intervention are, and watch their educational videos. If you can, get a home therapist or a shadow teacher. Most importantly, learn to do some of the things yourself, so that you are not heavily reliant on outside help for your child.
One last thing – if the intervention season is not managed well, it can be detrimental to the child and his or her caregivers. Even in the midst of their desperation and haste to start interventions, parents need to be cautious as to how, where, and from whom they are getting intervention.
Autism does not go away in a day, a month or a year. It is a lifelong condition that parents of autistic kids need to learn to live with. There will be bad days, good days, and in-between days. There will be days when you, the parent, longs to run away and hide, or turn back the clock and do things differently in the hope that you would prevent autism. Sadly, not many people outside the autism world get this, and many of them will push you into pursuing some form of intervention.
Parents, take one day at a time. If things do not go well today in therapy or home activities, try again tomorrow. Take a break, get out of the house, hang out with your friends, or just do something you love so that when you get back home and autism is waiting for you, you are ready to handle it. Educate the people around you on what autism is, and how they can support you as a family. You may be pleasantly surprised to find that someone will be only too happy to watch your child so you can catch a breather. Lastly, don’t be in a hurry to expect results. Let your child enjoy their childhood on some days, as you enjoy being an ordinary parent. Intervene as often as you can, and the rest of the time, relax.
Autism parenting is quite the journey, yes, but it is a manageable journey. You will get through this!