Monday, June 11, 2012
To parents of a newly diagnosed child
In this journey of healing autism, I have met some absolutely incredible people. These are the parents of children with autism. They are a brave, determined and educated lot. And they never fail to amaze me with their strength and willingness to do anything for their children. Since my journey with my daughter began, I have met with several (probably over one hundred) newly diagnosed families to talk to them about my experiences with Marley. In our conversations, there are always some overriding themes. They always want to know what they should focus on with their child. In my opinion, there are six points to cover.
This includes spousal or significant other support and other parent support. For the significant other in your life – be kind to one another. Everyone reacts to this news differently. Life is hard enough right now without being at odds with each other. Respect the others person’s view and try to use kind words when communicating. If you have a strong relationship, it can pull you through the hardest of times.
As for other parents—this is very important. I personally put this off for the longest time, throwing myself into my daughter’s therapies and everything I thought she needed. But this was a mistake because the best knowledge I gained about autism was from other parents. Parents who have been in the trenches and witnessed what worked for their child. You certainly won’t get it from most doctors. However, other parents will give you the best recommendations for the best doctors. They will tell you the truth about the good, bad and the ugly. And the best part is…they understand. They have lived it. There is no judgment there. They have nothing to gain other than helping another parent because they have been there too. So join the local Autism Chapter. Go to local meeting. And my personal favorite….network through social media. Facebook is my favorite place to ask my local and national autism friends about the latest treatment, ailment or behavior.
Find a Good Doctor:
I have been to my share of stinky doctors with my daughter. But every once in a while, you run into a really good one. Most of these doctors are DAN! (Defeat Autism Now) doctors. DAN! doctors focus mainly on the true underlying cause of the autism-like behaviors. Unlike a traditional pediatric developmental pediatrician, they are not interested in diagnosing your child. Only seeing the symptoms of the child and what medical problems could be causing these behaviors. This involves lots of blood work and testing, but it well worth it.
One way to find a great DAN! Doctor is by going to an Autism One conference. They are held annually in Chicago. I have personally been to several DAN! conferences, a NAA (National Autism Association) conference and an Autism One conference. They were all wonderful but the Autism One conference had the best selection of presentations in a warm, supportive environment.
Find the underlying medical problem:
Children with autism have several medical problems that go undiagnosed and untreated simply because they have an “autism” diagnosis. The diagnosis is almost used as an excuse to not treat the child’s true medical problems. ASD kids can suffer from seizures, asthma, allergies, GI problems, food sensitivities, mitochondrial dysfunction, MTHFR gene mutation, toxicity, oxidative stress, low glutathione, vitamin deficiencies and so many others. Finding out your child’s true medical problems and treating them helps to alleviate the autistic symptoms. The key to finding these medical problems lies in finding a good DAN! doctor.
Diet change is a huge part of finding the underlying medical problem. It must not be dismissed as it is critical to at least try diet alterations. They can be life-changing for some children.
Occupational Therapy, especially sensory integration therapy, is crucial in teaching your child to deal with real world obstacles. It will either “sensitize” or “desensitize” them to make things more bearable in their world. Behaviors change and children can find coping mechanisms that help them deal with overwhelming situations. And of course, a great speech therapist is a MUST. We love ours!! She has been with us for 8 years.
This, of course, is a controversial one. And it is not a topic I take lightly. But it is my true belief after talking to so many parents, and witnessing it myself with my own kids, that too many vaccines cause a toxic overload in our kids. I absolutely do NOT want any kids to get sick. But it seems to me that they are already ARE sick. So if your child has a recent diagnosis of autism, I would recommend stopping vaccinations. I am NOT a doctor. I am a mom. And it is my personal belief that continued vaccination will only make the child worse. Enough said.
Get to work:
Be good to yourself. Let yourself be scared, sad, whatever…then get over it because there is work to be done. Read everything you can get your hands on. Always consider the source. Do they have something to gain? Go to pubmed and do your own homework. You are your child’s best advocate. You know your child best. Do not believe a doctor that says there is no hope. Do not believe a doctor that says there is no treatment. Do not believe a doctor that says there is no chance at recovery. Because I am here to tell you that recovery is real. It does happen. But it takes a lot of work. A lot of dedication. A lot of love. And you can do it. I know you can.
Best of Luck as you embark on this journey of healing. Please know I am here cheering you on!