Saturday, May 12, 2012

Repost: Guide to the Day After Diagnosis

For a friend, who wanted just the Guide, and not the rest of the original post.

Quick Guide for Parents for the Day After Diagnosis: 

(The Day Of Diagnosis, just go home and enjoy your child. Maybe put a fresh pot of coffee on, or take up drinking coffee.)

1. Here are the people to call: 

*Local Autism clinic, if you didn't get get the diagnosis there. Here, that would both Kluge Children's Rehab and Kennedy Krieger. Some centers, like Kennedy Krieger, take a year to get an appointment for anything. Kluge takes a couple of months. A year is a little long, but a couple of months is OK. This is urgent, but not an emergency. Besides, you have other folks to call and get going. 

*The local school district. Many of teh supports your child needs are the responsibility of your local school district. You want to get a feel for the place, have an eval, get into the system- even if you decide to homeschool. 

*Your insurance. KNow what they will cover, and what they will not. Many insurances will cover OT without batting an eye, but will not cover speech therapy because it is "educational." Some insurance see "autism" and cover NOTHING. Some see it and cover EVERYTHING. Some therapies are considered educational and not medical- and this can be different from insurance to insurance, state to state. You may choose interventions that are not covered, and you need to know what you will be paying for, how much it will be, and what you will need to do to cover it. 

*The speech pathologist. Some centers have them, some local hospitals have them, and there are lots of private practice ones. Be sure they are going to work on communication, not just speech. Do they do sign language, switches, PECS? How do they use these as tools for communication, and not just learning to speak? How do they use them to encourage- but not force- speech? Do they also work with reading and other visual communication? 

*The physical therapist. Many autistic kids have gross motor problems that need to be addressed. Many don't need a PT (Joey doesn't need a PT). 

*The occupational therapist. Ask specifically about sensory integration therapies. Most autistic kids have some form of SPD (though not all!). You don't want just a buttons and zippers OT, you want one that will take an integrated approach and can address the needs of your child.

*Your pediatrician. Be sure they are immediately aware. Ask questions. What will they do for you? What do they know abotu autism? Are they willing to do some research or attend a conference or workshop about autism? If you have a doctor who seems ignorant of autism- and many are- and is unwiling to beome educated, then you will be needing a new ped. 

*Psychologist. You may need some testing done in ways the school doesn't accomodate, some understanding of your child's mental health, and yes, you may need medications. Be prepared. 

*Your local Disability Resource Center. These types of organizations can help you navigate local resources, prepare for things like Medicaid Waivers, even help you understand disability law and rights. They can also help you network with other parents of disabled children. 

*State agencies for the disabled. Many states have offices specifically geared to helping people with disabilities and protect their rights. Its a good idea to be familiar with these offices and what they actually do in your state or locality. 

*A Lawyer. You're about to become an expert in disability law. School districts and insurance agencies can be not fun to work with. Be prepared. Find a lawyer and advocate who deal in disability and educational law. BE prepared in case you run into problems- its a lot easier to prepare for a fight if you already have your champion lined up, rather than waiting until you have a problem. I haven't met a parent yet who didn't have a problem. 

I know that is a lot of phone calls. Prepare ahead of time- get a big loose-leaf notebook to keep paperwork, evaluations, even phone messages in. Just keep it by date; when you make a call, note it on a sheet with the date and a summary of what was discussed, and put it in the notebook. When the evals come, just put them in the notebook. Bills. Letters. IEPs. Anything. I even have Joey's birth certificate at the front. I'm on our second 3" binder. 

2. Here are things you need to do: 

*Relax. Your child hasn't changed. You just have a new label to point you to resources you might need.

Read. The books I recommend are: 
That will give you a start. I encourage folks to include their favorite resources in the comments. 

*Read some more. You will need to research different methods and strategies used with autistic children. Some I can think off the top of my head are ABA (Applied Behavioral Analysis), PECS (Picture Exchange Communication System), Floor Time, Sensory Integration, Therapeutic Listening, GFCF (Gluten free/Casein free diets) {and other possible allergies and diets- if your kid has sensory issues, allergies can drive them crazy!], ABLLS (Asessment of Basic Language and Learning Skills), TEACCH (Treatment and Education of Autistic and related Communication-disabled[or handicapped] Children). 

Get online. Check out the links I have in the sidebar. I've developed a handout for new parents here in Virginia, I'll be happy to email it to you. Also, you can network with more great folks like us. :) 

*Go out and have some fun! Remember, your child hasn't changed! Go out and do the stuff your child likes to do! Try to introduce your child to new experiences- as you would any child! These outings may take more preparation(and work) than for non-autistic families, but it's worth it. Keeping kids locked in the house will drive you crazy, too, and deny them living. Yes, some folks will stare. You may get unkind comments, or offensive comments. But you know what? You would have gotten them even if you didn't know about autism. Now you know how to support your child in the face of these people- "My kid's doing a great job with this new experience. What's your problem?"

Summary? You now know your child is autistic. Now you have a better plan for moving ahead and educating your child- which now makes your life better, not worse. Yes, now that you know the kinds of resources you need, you now have work to do to tap those resources- but now you have narrowed the field to the resources you may need!

See? Not scary. Just needs a little information!

Riding the Roller Coaster (and Ryan Break)

I am totally sorry about not blogging. I have a ton of stuff to splash across the blogosphere, and a ton more stuff that I can't, but is really super important. I have to take care the stuff I can't put out to the public first right now, but I'm getting there. So I'll put out some stuff that is perfectly public-worthy.

First, the bad news. We had another major personnel shift at school- very suddenly, with no warning. We knew right away at home. Hence, roller-coaster city. Joey's anxiety has skyrocketed, and so he is barely holding it together, all the time. The smallest of upsets can put him over the edge.

When he came home from school yesterday, everything was in an uproar. Being early dismissal day, the schedule was, naturally, all screwed up. I had two edgy boys bouncing and screaming, so we gave up and went to the park to bounce and scream. It was working beautifully. The boys are especially fond of the section of the park with the new equipment. I will say up front this section of the park does have a sign stating that it is designed for the 5-and-under crowd. However, it is very typical to find kids of all ages on all the equipment, and my kids are very aware that they have to be extra gentle and extra careful in this section of the park when there are little kids about. Besides, they love to be in this section because the love to play with the little ones. The equipment is perfect for Joey's not-so-obvious mobility challenges, and the smaller kids are easier for him to play with. He also likes being the "big kid" to the little ones, and he likes how they are gentler (because they are younger). Andy also likes the little ones, and being the "big kid" leader in games. Both adore babies. They spend a good amount of time playing all over the park, including the "preschool zone." Hey, my kids still love Shaun the Sheep.

There were lots of younger ones out and about yesterday, and my boys were loving life. I was watching Joey closely as he was helping swing a baby and talking to a mom, when suddenly Andy comes running past me, with his crying face on. His smaller friend came after him. It took a few minutes for Andy to recover enough to come back from behind a large tree and talk to me.

"What happened, baby?" I asked, giving him a quick hug as he broke into tears again.
"That man said I can't play here!" he wailed, pointing. Sure enough, there was a dad, with a small boy, and a person I later realized was his wife, with a little girl. I encouraged Andy to go play with his friend, and the pair assiduously avoided the usually-favorite area in favor of running among the trees. All seemed fine, just a misunderstanding, no big deal. After all, there were several other children on the equipment in the 6-8 range, and nobody was being rough or unruly.

But as I watched, Joey finished his conversation and headed for the equipment. Sure enough, the man stopped him and started speaking with him, and Joey bounced on his heels a little, a sign he was unhappy. I got up and headed for intervention. As I closed in, I heard the man say, "This area if for the babies! You're too big to be here! Go on!" Joey repeated back, "It's for babies!" in a tone I knew was bad news.

"Go on and play, Joey," I addressed Joey firmly as he turned to me, and emphasized my words with sign, Play.
"The babies don't like me," Joey frowned at me.
"It's OK, go play," I repeated, and repeated my sign.
"This area is for the under-fives! He can't play here!" the man shouted at me.
"Excuse me, sir," I replied firmly, "but this is a public park, and my children need this kind of equipment. Joey," I repeated my sign to Joey, "go ahead, sweetheart." Joey climbed up on the equipment, and the man threw his hands up, clear exasperated.
"What, is he retarded or something?"

No, I didn't deck him. Sorry.

"Sir, this is a public park, and using that word is very offensive." He huffed off instead of answering me, saying something to his wife that made her frown and pick up the little girl. I did not pursue the point. In this state, he could easily have a concealed weapon, and I had made my point clear. I watched from my usual seat as he gestured and I could hear he was still saying things. Whatever they were, the other families were now all glaring at him. Joey called something to him, trying to include the man in his game- something Joey often does when adults are about. The man ignored him. At some point in the proceedings, another father turned to the man and something. From the sudden desist of ranting, I assume it was something to the effect of "shut up."

I should note here that neither Joey nor Andy did anything to hurt their children, block the slides, push them, or anything else that might have been dangerous, intentional or otherwise. When the little ones wanted to get down the slide, Joey moved aside and let them go, cheering when they made it to the bottom, offering encouragement when they were at the top. Joey waved at the man's little boy, that's the only contact even attempted with these particular children.

The couple finally decided to scoop up their kids and go away. Neither glanced in my direction as they went out, which was just as well.

That is when the families started coming over to me.
"What jerk." "Are you OK?" "We sure love your boy, he's so sweet." "Is your other little guy OK? He looked upset." "What was that guy's problem?" Several were upset that he had referred to Joey as "retarded" in his stream of criticism of my parenting choices.

Sometimes when we run into people like that, I sometimes wonder if it's me. I won't say he didn't have a point. I will say there were more constructive ways of communicating it.

So we need a good Ryan break.