When our son was diagnosed, we were given a copy of the Autism Speaks 100 Day Kit. I read some of it and then got to work - basically, 100 days was much too long.
As time has gone on, I've thought carefully about what I would do if I had the time over. We moved within 30 days of our son's diagnosis, which involved a change of doctor and all those other services he now needed.
I will break down for you what I think are the best concrete steps to take.
1 - Hug your child. Lots. This sounds silly, but, it's a hard thing to hear, that your child has autism. You need to have the strongest bond possible with your child. You have lots of work to do together.
2 - Find out what your health insurance covers. In the US, different policies cover differing levels of services. Our insurance through the military is pretty comprehensive and covers Speech Therapy (ST), Occupational Therapy (OT) and Applied Behavioural Analysis Therapy (ABA). Also figure out what quantity of services your child can receive and your cost share. These 3 therapies are the main ones used in the treatment or remediation of autism. Some children also need Physical Therapy (PT).
3 - If your child needs a referral for these services ask your doctor to put them in. Depending on the doctor and insurance policy, you might also need prior authorization. Ensure you jump through those hoops that your insurance requires since the costs will pile up quickly. You do not want to find out they won't pay for services because you forgot something.
4 - If your child is not already receiving services through your state's Early Intervention program (for under 3 year olds) or through your local school district (3 and over), contact the appropriate agency for your area. They can provide social groups, speech and occupational therapy and in some cases behavioural therapy. Once a child is 3, the responsibility for those services switches to the local school district. School districts can be a great resource or a nightmare, depending on both how they operate and how you advocate for your child's needs. Our son attended the local preschool for our school district and they were fabulous. Look for an inclusion (a mixed environment of both typically developing children and children who need additional help) setting if you are able. If your child is already in the school system and does not currently receive any kind of extra support (and they need it), talk with your child's teacher and principal and ask them to schedule a full evaluation for services.
5 - Find a support group. Even if the support is not local to you, trust me, you need to talk to people who are going or have gone through what you are. Facebook has a ton of support groups. Also look for organizations such as TACA or the Autism Society that have some local groups. Additionally, Generation Rescue has their "Rescue Angels" program, where an experienced autism parent can mentor you through this time.
6 - Keep an open and hopeful mind. You will hear and read all kinds of stories about how 'so-and-so's child' was 'cured' in 6 months. Whilst those stories can be true, they are often not. Do not let the miracles (real or not) drag you off to delusion land. On the other hand though, children do recover. They do lose their diagnosis. They do grow and develop and learn. They grow up to be independent and happy adults. The key is to always tailor any intervention to YOUR child, not anyone else's. The children who lose their diagnoses often do as a result of shear hard work and a little luck. They do not simply 'grow out of it'. There is no reason your child can't be one of those to lose their diagnosis though.
7 - Read. You will need to read everything you can get your hands on. Read as much as you can. I will post a book list of texts we found helpful at some point, but, in the meantime I'll give a couple here. One of the first books I read was "A Child's Journey Out Of Autism" by Leeann Whiffen. Their child did very well with a thoughtful and combined approach. That was what I needed - a book to give me hope. Another good book is "Healing The New Childhood Epidemics" by Kenneth Bock. A scientist by nature and education, I needed to understand what was happening from a biological standpoint. This book gave me a great start on where we should begin our son's journey to health.
8 - Consider your child's doctor. Is your child's doctor open-minded and a team player or are they condescending and aloof? Mention the thought of trying a new diet to them. If they dismiss it as 'nonsense', run for the hills. You will need your child's doctor to be a partner, not a dictator. You need a thoughtful and considerate person to help your child reach their potential. Whichever route you take for your child, whether or not you choose a biomedical approach, your child's doctor has a large role to play and both you and your child need to feel like you are supported and listened to. You will also need continuity of care, so if your child sees a different doctor every time, it might be time to move on. Just for time's sake, you do not want to be explaining yourself every time you go to the doctor's office. If you decide to switch doctors, ask other autism parents in the area who they like. If you decide to halt vaccinations, ensure you ask about the vaccination policies of those doctors. Some will no longer accept patients who do not vaccinate, or support those parents who want an alternate vaccination schedule.
9 - Take a good look at your child's diet. I cannot stress this enough. If your child limits food types, or does not eat any fruits or vegetables, you are going to need to do something. If your child has sensory issues, look into a feeding program at a local hospital OT department. These can be quite effective. Try and introduce new foods as much as possible and let them be real, whole foods, not processed food-like products. Your child needs the nutrients and any time a food is processed, you lose those.
10 - Depending on your insurance situation, schedule evaluations for OT, ST and ABA. Your insurance provider should be able to give you a list of approved local providers. It might be that your child doesn't need services, but, if they do, get started as soon as you can. Many providers have wait lists for these services, especially for appointments to coordinate with school hours.
There are probably a ton more things that I haven't listed here, but, this gets you started. Don't do nothing. If nothing else, get down to your child's level and play with them. You will be your child's 'rock' and they need to know that you 'get' them.
A great site for those with newly diagnosed children is TACA. That would be my first stop on the internet above all.
If there's anything I've missed, please feel free to comment!
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