Ten Things For Parents of the Newly Diagnosed to Consider

3 Apr

After reading Hannah Brown’s snarky, horribly awry piece that would have made me shoot myself if I had read it when Shelby was diagnosed, I began thinking there has to be a better way. (If you just got a diagnosis, don’t click on that link.) The real shame is, she had some good points, but they were lost in her negativity. So here are some gentler approaches that will hopefully not leave a parent despondent and hopeless

1. It’s okay to be mad, it’s okay to be sad, but it does get better.  

Guess what, autism is NOT a death sentence. It seems overwhelming especially in the beginning and may from time to time, but you will find your way. There will be truly wonderful moments along the way.  You will celebrate things that might have seemed ho-hum otherwise. Not every single day will be a downer.

2. Autism is not a diagnosis just for your child, but your whole family…so make sure to get the help YOU need too!

First and foremost, you are still a family however that family is made up. It is important to find the supports not just for your child, but for yourself and other family members as well. Many communities have parent/caregiver support groups that help parents navigate not only services and programs but their feelings as well. More communities are now offering support groups for siblings as well and grandparents or other family members. If being in a group is too much initially, there are many psychologists who can help you worth through your difficulties one on one. And if you need medication short term or long term, that’s okay too. It’s not a requirement, but may be helpful in individual cases. There is also the wonderful world of respite care in many places. There is no shame in seeking out respite care. We all need a break sometime.

3. Borrowing a good idea Hannah had that got drowned out: Do not forget your neurotypical children if you have them.

They are still your children and they still need you regardless of another child’s diagnosis. Many families will occasionally utilize respite care to allow them to take other children out for a movie or other activity. Or allow their autistic child to watch tv they normally try to limit so they can help with homework if more help is needed. Your other children may also need help coping. In your searches to find supports for a child with autism, it’s important to get supports for your other kids as well.

4. Allow yourself a guilty pleasure. 

You have a tough job and you deserve a reward and an award. Maybe it’s a girls or guys night out every other week or just a chocolate stash. Maybe you let yourself indulge in soda at dinners or a new pair of shoes once a month. Those little things will help you get through the times that feel impossible.

5. It’s okay to try a variety of therapies to find what works, but it’s also okay to drop something that’s not working. 

There are as many treatments and therapies as their are individuals with autism. It is easy to be overwhelmed. Not every therapy works for every child. It can be discouraging if you find a therapy unhelpful and know others who have had great success with it, but it may do more harm than good to continue an ineffective therapy simply because you want to give it more time because of someone else’s experience. And if something feels like it’s snake oil vs a real therapy (and there are some out there that have no basis in fact or research backing them up) it’s okay to pass on them. And sometimes, therapy can become too much and it’s okay to take a break. A friend with two autistic children is taking a break from occupational therapy right now because her kids are just overwhelmed, they’ll resume at some point, but their time off is actually beneficial at the moment.

6. If you choose to try a dietary restriction, try and find a nutritionist and allergist to help you.

Diets such as gluten-free, soy-free, casien-free and even vegan have  been very helpful to many individuals on the autism spectrum. The reason I suggest having these two specialists is to ensure that if your child has an actual allergy or intolerance you know the extent and to ensure your child is still getting all he or she needs to thrive. I know a mother who found out potato chips are gluten free and went overboard with them (three big bags a day, yikes!). Nutritionists are also helpful in finding good alternatives to foods you may eliminate but are favorites.

7. Find a mentor.

Many organizations associated with autism awareness also have mentoring programs where parents who are in a position to give back can and do to parents going through a rough patch or with a recently diagnosed child. These mentor parents can be a God-send as they can often tell you from experience information local to your community that is not generally known. For example, how to get an exemption if your child is denied to a certain program or where to get dairy free cheese.

8. Keep lines of communication open.

While we all may need some time to process a new diagnosis or therapy, it’s very important not to close ourselves off from those who care about us. While you may be the only one in your circle of friends who has a child with autism, you might be surprised how many people want to learn more and to help you. I have gotten amazing support from people whose lives had never been touched by autism. Whether it was just an encouraging word or the friend who went out of her way to  buy Shelby a big bag of cheetos after finding out how much she loves them when we were having a rough day, it was appreciated. And while some people may have difficulty with this, you will figure out quickly who you can go to for support and who you cannot.

9. Don’t be afraid to ask questions or for more information.

When my daughter’s preschool wanted to start using the Wilbarger Brushing protocol, I immediately requested detailed information on it. I knew immediately that the protocol was not truly therapeutic for Shelby but I knew she would enjoy it and in her case not hurt, so I consented. It was actually more of a social solution vs a sensory one and once it accomplished what I wanted it to socially, I had it stopped. You have more invested in your child than any doctor, teacher or therapist so it is your absolute right to be present for all visits, therapies if you want and get the full information on anything being done or taught to your child.

10. Don’t beat yourself up.

There is nothing YOU did to cause this. This diagnosis is not a reflection on your parenting or the strength of your family. We can always wonder “what if,” but in the end to blame ourselves does not help ourselves or our child.

I hope this list is helpful and appreciate any other suggestions in the comment.

(Also I would like to thank Sunday Stilwell for alerting me to the original article and wrote this excellent response.)

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One Response to “Ten Things For Parents of the Newly Diagnosed to Consider”

  1. Carrie Rogers April 3, 2012 at 10:41 am #

    I agree. This one is much better written. Yesterday’s had a nice “you are doomed to be miserable” message. However, a lot of what was in yesterday’s article were things some people told us and made things seems very hopeless and overwhelmed. As we knew they were not hopeless but may not always be sunshine and rainbows..but who were we kidding we already knew that..which is what lead us to getting our Son evaluated. I really like reading your blog and your points of view and the information you share. Hope you have a Happy Easter!

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