What's Next After the Diagnosis?

So many parents I have had the opportunity to work with share stories of the first time they learned their child was on the spectrum. There is always a range of emotions from intense grief to intense relief and every imaginable feeling in-between. Whatever the feelings, it is important to remember, that your feelings are valid. With that being said, the best way to move forward may be a trip on the LOVE BOAT. How about we end with talking about the “LOVE” and start with the “BOAT.” This isn’t an article about that show from the 70’s but when trying to remember what steps to take and what direction to go in, acronyms sometimes help. If you like maps, you will know that getting to a destination is much easier if you know how to get there. B – Breathe. Deal with your feelings first. Whatever those feelings are – and those emotions range and change and you can certainly feel relief while also being in a state of sad or angry or all of the above. The statistics on Autism are rising, particularly in New Jersey. There is certainly a reason for that. You have to decide how important the “Why” is and if you want to go off in that direction or if you want to spend your time and energy building on the strengths that may exist in your current situation. Surrounding yourself with positive people and positive organizations can make a world of difference. O- Oxygen. This is certainly complimentary to the idea of breathing. Remember the metaphor of the airplane movie we all watch prior to take-off. PUT YOUR OXYGEN MASK ON FIRST BEFORE YOU HELP ANYONE ELSE. Parents best serve their children by helping themselves first. This is about dealing with your feelings and also taming the “committee” that resides in your mind as well as the well meaning “armchair quarterbacks” who may tell you that your child is not Autistic, or have Asperger’s, that they just need discipline. A-Action Plan. Get yourself a binder to keep your resources and therapies and professional opinions organized. There will be evaluations, opinions, educational plans (which vary according to each individual child), resources, suggestions, etc. You may want to enlist the help of a “case manager” or social worker to help coordinate your family’s care. Assemble then, your team of professionals according to what feels right to you. You know your child better than anyone else. Multiple therapies at once can be extremely overwhelming and may take you back to your “oxygen” phase. Decide which priorities are most important for your child and family’s well being. Therapies may consist of occupational therapy, physical therapy, speech therapy, individual therapy, family therapy, social skills/group therapy, early intervention (depending on the age of your child). If your child has issues with food, then you may want to enlist the services of a feeding team (there is one offered by Children’s Specialized Hospital that is just wonderful). Read as much as you can – from positive sources such as Tony Attwood or John Ortiz. You might also read books by authors who are on the spectrum such as Temple Grandin, Stephen Mark Shore, William Stillman, John Elder Robison, and more. In order to understand your loved one, reading from a person on the spectrum’s perspective can be very helpful. Attending a workshop or talk offered by someone on the spectrum can be invaluable. It dispels any “doom and gloom” you may read on the internet or hear from the professionals who never met your child. Surround yourself with success stories so you know that with love and support, your child’s development has potential to be explored and appreciated. T-Team Up. Begin to identify the individuals in your life who are supportive and positive. Nothing positive will come from being negative. After facilitating numerous grandparent groups, it is apparent that grandma and grandpa can offer unconditional love and acceptance a lot of the time when parents are tired and/or need time to be a couple. If you find your child’s grandparents are supportive, then be sure to keep them in the loop of what is happening in treatment. Make sure you “fire up” your team with mom and dad first. Remember that you are a couple and make time for you. It’s the “oxygen thing.” Keep the conversation on the two of you and try hard not to talk about the kids. Maintain your sense of humor. James Thurber put it this way, “Humor is a serious thing. I like to think of it as one of our greatest earliest natural resources, which must be preserved at all cost.” Locate parent support groups whose values appear congruent with your own. Thanks to the Internet, there are cyber groups as well as groups that may offer babysitting so that parents can obtain the support they need. All parents everywhere with all kinds of children could use support. It is not limited to those with children on the spectrum. Some groups have guest speakers, plan outings to the zoo, the beach, and more. Sibling support can prove to be invaluable. Check with local resources to see what kinds of sibling support groups and/or activities are available for your child’s brother(s)/sister(s). There are several SibShops being offered by agencies in New Jersey such as the Family Support Center in Brick. In addition, they run monthly bowling events for siblings of kids with special needs. Be sure that the therapists whose services you enlist are individuals who you and your child feel comfortable with. This is a team effort; so hopefully, your service providers will try to be in touch with each other. Go with your gut instinct. If your gut screams that something is not right, then by all means, it is time to make a change. There is nothing more valuable than a parent’s intuition. Learn to go with that. LOVE. – There are no witty quips to offer. The “LOVE” comes before the “BOAT” as was stated in the beginning of this article. LOVE and Unconditional Acceptance are key ingredients in any child’s life. Just “being” with your child, sharing the space, making time to play, to have fun, to explore and to be sensitive to your child’s sensory needs are worthwhile experiences which in the end will pay off. Resources: Asperger’s Syndrome Education Network (ASPEN) • Autism Spectrum & Non-Verbal Learning Disabilities • Education • Support and advocacy programs • Meeting locations throughout NJ • Phone: (732) 321-0880 • Website: www.aspennj.org/ Parents Of Autistic Children (POAC) • All services are free of charge • Dedicated to meeting the needs of families and children • Office in Brick, NJ • Events throughout NJ • Phone: (732) 785-1099 • Website: www.poac.net/ The Family Resource Network • Offers behavioral services, guardianship services, and in home support , sibling programs • After school care, basketball camp, fitness training, out-n-about programs • Offices in Manasquan and Brick as well as other locations in the NJ • Phone: (732) 292-8020 • Website: www.familyresourcenetwork.org The Global and Regional Asperger Syndrome Partnership (GRASP) • Improve lives of adults and teens on the autism spectrum through community outreach, peer support, education, and advocacy • Support groups, online support groups, women’s group, LGBT networks, siblings groups • Website: www.GRASP.org Autistic Self-Advocacy Network (ASAN) • Works with individuals and families as well as communities to spread awareness • Run by and for Autistic people • Support and service for those who need them • Website: autisticadvocacy.org Annette L. Becklund is the Director of Annette L Becklund, MSW, LCSW & Associates LLC in Neptune, NJ specializing in Autism, Asperger’s, PDD NOS, ADHD and other unique ways of being. For more information: www.AnnetteLBecklund.com or call 732-292-2929.