By Shanti Kurada, MS, MBA
Very often, parents know that their child has some developmental issues, well before they receive a diagnosis. They may even recognize the signs of autism that they have read or heard about. This can be a difficult, traumatic time for the family. It is important to take steps in the right direction to take care of your family’s emotional well-being as well as begin the process of addressing your child’s autism. You may find yourself torn in different directions. You may be flooded with overwhelming amounts of information and advice, as you struggle in trying to decide what to do and whom to rely on. Here are some basic strategies that can be helpful in navigating the maze of choices and paths that you are presented with.
1. Get a Comprehensive Evaluation
A thorough evaluation is not only important to understand your child’s strengths and deficits, it also becomes the basis for appropriate services. You can get 2 evaluations done free of cost, one from your Regional Center and one from your school district. It is important that you also obtain a private evaluation. Many private psychologists that other parents recommend have long wait lists spanning weeks to months, so it is important to start this process early on. Bear in mind that parents’ opinions are subjective, and what works for one parent may not work for another. If possible, set up an appointment to speak with the psychologist, without the child involved. This is to ensure that you feel comfortable with the professional and there is some level of trust established, before subjecting your child to an evaluation.
Please refer to the article, ‘Obtaining a Psychological/Educational Evaluation’ by Joseph Jones, PsyD, in the Jan-Feb 2013 issue of Autism Bay Area Magazine.
2. Start a Journal
Make observations about your child. If you have another neuro-typical child in the family, you can start making note of missed milestones and any atypical behavior, using the neuro-typical sibling as a model. If the special child is an only child, a friend’s child of approximately the same age can serve as a reference. You can also look up developmental guidelines either at the library or the Internet for this purpose.
Also make note of your child’s unique traits, preferences, dislikes, and fears. What motivates him? What gets him too excited? What calms him down? How does he communicate? How does his responsiveness vary, based on the environment? How does he relate to various members in the family?
3. Talk to Your Spouse/Family
This is a difficult and stressful time for the family. Talking to your spouse (or in the case of single parent families, talking to a close family member) is crucial. Acknowledge feelings and discuss ways to cope with the situation. Not everyone will go through all of the 5 stages –denial, anger, bargaining, grief, and acceptance – and even if you did, it may not be in the same order, and there may be lots of revisiting of some stages.
Regardless of how you deal with it, reaching the acceptance stage is important, both for your well-being and your child’s. This is when you can begin to truly help your child.
Make a list of your new responsibilities and things that need to be done. Discuss with your spouse or other family member how you will share responsibilities and juggle your respective tasks. Your workload practically triples when your child is diagnosed with special needs. All of a sudden, you will find yourself becoming a teacher, advocate, therapist, behaviorist, and counselor (besides being a parent). You will be making multiple appointments, doing a lot of paperwork, and driving a lot more – to therapies, playgroups, support groups, workshops, etc. Planning and being organized is the only way to fit in everything and ensure you are addressing all the important areas.
Please refer to the article ‘Redefining the Father’s Role’ by Peter Dunlavey, RDI Consultant, in the Jan-Feb 2013 issue of ABAM.
4. Begin Using Communicating Partners
Communicating Partners is a technique developed by
Dr. James McDonald as a comprehensive system of responsive communication that families can use at home, with their children. The technique primarily involves joining in the child’s world and engaging with them in their world (the physical, sensory one), and to ultimately invite them to join ‘our’ world – the neuro-typical world of language, logic, and other abstract concepts.
This technique is effective in 2 ways – for the first time, self-absorbed children who prefer to tune out the world will begin paying attention because someone in the adult world is acting like them. The other great advantage is that this technique is extremely therapeutic to the parent. For the first time since the diagnosis, the parent is able to relax and simply play with the child. They are able to get that first eye contact and interaction and maybe even that first meaningful smile that they have been craving.
Using a responsive strategy in the earliest days of a child’s diagnosis can build a meaningful parent-child bond and positive attitude for the whole family. Later, as you explore other interventions – behavioral, speech, OT, etc. – you will find that Communicating Partners will continue to complement these as an avenue for parent-child bonding as well as a developmental aide.
Please refer to the article, ‘Before Speech: What Children Need and How You Can Help’ , by Dr. James McDonald, in the Jan-Feb 2012 issue of ABAM.
5. Research Your Insurance Plan
Applied Behavioral Analysis is a proven and effective tool for helping children with special needs learn academic, independence, safety, and other skills that are crucial for their development and survival in this world.
Please refer to the article ‘Autism and the Law’ by Dr. Jenfer Harris, in the Nov-Dec 2012 issue of Autism Bay Area magazine, to understand your insurance plan, what it may or may not cover, and how to get started with the process.
If you are already receiving ABA services, please refer to the article, ‘Making the Most of Your In-Home ABA Program’ in the Jul-Aug 2012 issue of Autism Bay Area magazine, to utilize your services effectively.
If you are considering speech therapy, please refer to the article, ‘The Role of Speech Therapy’ by Patti Hamaguchi, in the Jan-Feb 2013 Issue of Autism Bay Area magazine.
If you are considering occupational therapy, please refer to our OT column, ‘Body Language’ – it covers various OT related issues and give you an understanding of what areas this therapy addresses.
6. Learn about Nutritious Diets
A growing body of research by the nation’s most respectable institutions (including our very own local ones – Stanford University, University of California, Berkley, and CalTech) suggests a link between the immune system and autism spectrum disorders. This has lead many parents to address the issue of food and environmental allergies – which in turn has given rise to the practice of healthful diets (that avoid pesticides, additives, GMOs, and common allergens such as gluten, casein, soy, corn) as well as providing cleaner/gentler/less toxic environments, free of chemicals (the use of herbal cleaning agents, lead free paint, alcohol-free mouthwash, aluminum-free deodorant, substituting parchment paper for Aluminum, replacing carpeting with natural stone, avoiding microwave ovens and ‘non-stick Teflon coated pans,).
Please refer to the article ‘Dietary Intervention for Autism’ by Julie Mathews in the Jan-Feb 2012 Issue of Autism Bay Area Magazine to get a basic introduction to various diets. Please refer to our GFCF Recipes pages (in every issue) for ideas on how to prepare healthy, delicious meals for your family.
Regardless of whether you see improvements in your child in response to changes in diet or not, a more nutritious diet is bound to have positive effects on the health of the entire family.
7. Look into Regional Center Services
The Regional Center is your advocate and helps you obtain services from various agencies and also provides some services that you are unable to obtain from other agencies. One of the first services you may qualify for is respite – a caregiver for your child allows you to take a break or spend time with your other children. Regional centers also provide behavioral consultations and parent training for specific behaviors. They may provide you coverage for a social skills class or certain vendorized summer camps. Talk to your case manager to decide on your IPP goals and what services you will need to attain them.
8. Read up on IDEA & Understand the IEP Process
The IEP has 3 main purposes – to evaluate your child and establish a diagnosis along with reports in every area of development, to come up with goals appropriate to the child’s developmental level, and then to decide on services that are suited to achieving these goals – primarily classroom placement and support services such as ABA, speech, OT/PT/ and the use of Assistive Technology. In order to be an effective advocate for your child, you must have a basic understanding of IDEA (the body of law that governs the IEP process).
Please refer to the articles, ‘Self Help in the Special Education World, Parts 1 and 2, by Susan Foley in the Jul-Aug and Sept-Oct 2012 issues of ABAM – these will give you a good start on the IEP process and help you avoid common pitfalls.
9. Start Building Supports and Networks
Look to your extended family, friends, neighbors and church for supportive people who are willing to help and can take on tasks for which you simply do not have the time or energy. The supportive people in your life can help with grocery shopping or watching one of you other children while you drive your special child to appointments. Sometimes having a cup of coffee with a friend can go a long way in relieving some of the stress.
You will run into parents who are driven and focus all of their energy on ‘fixing the child’. You will run into those who are weighed down by the diagnosis and are still battling with grief. These are all natural stages that parents go through and there is nothing ‘wrong’ or ‘bad’ about it– it is all part of the journey one must make in order to reach a state of acceptance and balance. However, some parents may reach this positive state earlier than others. You do have a choice as to which parents you spend time with and become close to. Choose wisely, as this can make all the difference. Socialize with parents who have reached the positive state, or who are by nature positive people and tend to look on the bright side of things. These parents will focus on solutions rather than problems, will see challenges as opportunities, and will continue to enjoy their special children regardless of their achievements. And their attitude will eventually rub off on you.
10. Be an Effective Parent
Remember that no professional can know and understand a child to the degree of intimacy that a parent can. It is only possible for a parent to deeply know his/her child due to the constant proximity and the very nature of the parent-child relationship. However, many parents may be so distressed by the diagnosis that they may lose sight of this important fact – a knowledgeable parent can be an indispensable and powerful member of the child’s intervention team. You truly have the power to help your child be the best that he can be. You will not be able to do it alone – you will need help from professionals, family, and friends – but it all begins with you. When you are able to set aside the ‘Why Me?’ question, when you are able to overcome your grief, you will start seeing how beautiful and unique your child is – you will then be a powerful force in aiding his development and shaping his success.
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