diagnosis

iPad Grant for kids with autism

When it comes to technology, I have way more ambition than skill. Getting an iPhone a couple years ago helped me see how even a novice user could find and use great apps. Diving further into the utility of technology for my personal enjoyment as well as my speech therapy practice, I was drawn to the iPad2.

Last spring my wonderful husband bought me an iPad2 (I may have given him a few helpful hints) and I dove into technology and apps with the aforementioned ambition. In addition to educational apps and therapy tools, I am impressed with the potential of the iPad2 to be used as a communication device. 

One big drawback with most communication devices is that they are bulky and heavy, therefore the children may not drag their devices with them wherever they go. I’ve also seen devices that are used primarily by adults who know the child well and can “read” them enough to select the page or icon needed. Basically when this happens, the child is communicating to an adult who then communicates with the augmentative communication device.

The iPad2, I think, will be (and already is for some of us) the Augmentative Communication device of the future. Thin and lightweight, it’s already ideal for portability. There are more communication apps becoming available daily, and they can be customized for individual needs. iPads are significantly less expensive than traditional devices and some insurance companies are catching on and starting to cover some of the costs.

Then there’s the cool factor (spoken like a true nerd still longing for coolness) that the iPad offers. LOTS of people have iPads or would like to, and children using them have devices that don’t look like “tools” but are appealing and versatile, and, well, just plain cool. On the spot, pictures can be taken and added to a communication app. Aides will not need extensive training for iPad use, because it is so user-friendly even a novice with technology (ahem, like myself) can easily learn to implement apps.

I came across a site, iTaalk.org, and saw that the iTaalk Autism Foundation is giving away an iPad a day until December 31, 2011 for children diagnosed with autism. There is an application online at their website, along with more information about iTaalk.org. Check out the resources and training for parents and professionals after you read about the grant at the link below.

http://www.itaalk.org/ipadadaygrant.html

To Tell, or Not to Tell?

i26I’ve met many parents who are pretty sure their child has AD/HD or some other learning challenge but they are hesitant to make it official by having their child evaluated and diagnosed. The fear that a label may limit their child, be inaccurate, or be used in discriminatory ways is valid. When my son, Josh, was approaching school age I thought about the advantages of private schools with smaller class sizes. Several people suggested that I go ahead and enroll him without telling the school personnel about his AD/HD diagnosis so they couldn’t turn him down. That was before we knew he also had an auditory processing disorder. I was assured that once he was enrolled in the school, they couldn’t kick him out just because he had a diagnosis and they would be forced to work with him. Wow! For one thing, Josh was pretty easy to pick out of a group as being different than his peers. I’d give it 5 minutes tops before things became unavoidably noticeable. So basically I would have had to keep him out of sight until school had officially started. Then there was the whole idea of the people he would be spending hours with each day being tricked into having a student that they weren’t prepared for and apparently didn’t feel equipped to deal with in their classroom. That made me feel sorry for Josh and for the teachers, since having someone who was “forced” to work with my child because I had hidden some vital information from them just didn’t sit well with me. I loved that boy, and the thought of sending him somewhere that he might not be wanted didn’t make sense to me. I had the same dilemma when it came time for Sunday School at church. I didn’t want to bias the teachers against Josh by telling them all his struggles, so I coached him on the way there and dropped him off like all the other parents with their children. The Sunday School teachers, bless them all, are volunteers in the church and most don’t have training as educators – and for most kids that’s just fine. But to do the “drop and run” with a special needs or challenging child is not a good idea, as I came to realize. Every week, the other parents would pick up their children and happily leave. When I came to pick up Josh, I inevitably got pulled to the side and told, “I need to talk to you about Josh.” Then I heard, week after week, a full litany of complaints from frustrated and bewildered teachers who were describing things that were not unusual for Josh but were not typical for most children. For example, Josh was not adept at sitting still for long. He was not deliberately disruptive and was never disrespectful, but his need to stand at the table while coloring his page instead of sitting in a chair like everyone else was considered problematic. His sensory issues led him to sit at the back of the group on his carpet square, and everyone else was huddled together and bumping into each other which Josh was carefully trying to avoid. But that meant he wasn’t “with” the group because he had made a row of one – just himself! And the list would go on and on until I was finally allowed to leave with my miserable son who knew that somehow just by being who he was he had screwed up again and people were unhappy with him. Those experiences led me to advocate more and be preemptive with anyone I left Josh with for any length of time. When there was a sub or a new Sunday School teacher, I made a point of telling them a bit about Josh and strategies that would help them, and I was careful not to dwell on the negatives. I shared Josh’s strengths, too, for I found that if I became negative about my son others felt free to share every little thing they saw as being wrong or weird about him. I was well aware of Josh’s struggles and it served no purpose other than to discourage me when others felt the need to complain about him. All this, and he wasn’t even doing anything “bad” on purpose! When someone was going on and on about all the things Josh did or did not do, I learned to quietly point out something that he had done right, or I’d share something that Josh had enjoyed learning in their class previously. This seemed to derail some of the negativity some of the time. Just as with our kids, nothing works all of the time but something will work some of the time. We need strategies for working with those who are in a position to care for our children, and hope that something will work some of the time. Whether you are a natural advocate or a reluctant one, if you have a child with a learning difference or special challenges, you must be an advocate unless and until your child one day develops the skills to advocate for himself. In my experience, being deliberate in my advocacy was hard but preferable to what happened when I just waited and hoped things would work out for the best.

To tell, or not to tell…

Making a decision about whether or not to try medication with your child is often an agonizing process. Once the decision is made, the results can lead you into discussions with a variety of people. Sometimes the effects are so amazing that your only regret is that you waited so long to give medication a try. At other times, the side effects are disappointing or it takes longer than you hoped to get the dosage right. It is only natural to want to talk about these things with your friends and family. The problem is, as soon as you let people know of your decision to medicate or not medicate, the unsolicited advice and commenting begins. Guess what? You are going to be judged no matter what you decide! If you go ahead and give medication a try, you will have people who are opposed to medication under any circumstance and look askance at you for “drugging” your child. If you decide that medication is not the best choice for you at this time, you will have people who are convinced you are cheating your child out of his best opportunity to function successfully by withholding medication. These decisions weigh so heavily and consume our thoughts that the tendency is to talk freely about them with just about anyone who is within hearing distance. It can come as a surprise that others hold such strong opinions about what you should or should not do with your child, and they may hold their positions vehemently. And you will always have people who believe you made the wrong choice. So should you tell others what you have decided about medication, knowing that you will be judged by some and supported by others? I’d say yes, but choose carefully to find safe people who will not blast away at you even if they disagree with the choice you’ve made. Share, absolutely. Just not indiscriminately.

Attention Deficit Hyperactivity Disorder Overdiagnosed?

I’ve heard so many people say that AD/HD is overdiagnosed that I’ve lost count of the number. Most of these people do not have AD/HD themselves, nor do their children. Interestingly, when I looked up “overdiagnosed” on an online dictionary to confirm the correct spelling I found that all the links to this word were connected to AD/HD with ads for articles in the following categories:
Attention Deficit Treatment
Adult Deficit Disorder
Attention Deficit in Adults
Attention Deficit Syndrome
Attention Deficit Disorder

You can check this out yourself at this link:

It would appear that there is a common perception that AD/HD is overdiagnosed and children are being overmedicated today. Yet a recent study by a team of researchers at Washington University School of Medicine in St. Louis, MO would suggest just the opposite. Their findings showed that almost half of the children who had a diagnosis of AD/HD are not receiving any medication as treatment. (Journal of the American Academy of Child and Adolescent Psychiatry, July 2006)
It is undeniable that the number of individuals being diagnosed has increased greatly over the past few decades. I think the increase reflects improvement in our awareness of the disorder and a recognition that in today’s society the impact of having AD/HD is far more readily apparent than in the past. One great advancement, in my opinion, is the acknowledgement that AD/HD is not exclusively a disorder of childhood. Adults continue to experience the effects of their AD/HD, even though it is more likely to be manifested in unfinished projects, for example, than in the blatant hyperactivity sometimes shown in childhood. For those with primarily inattentive ADD, it is often a relief to be diagnosed even as an adult if the diagnosis was not made during the school years. It helps to explain so much, and points the way to figuring out treatment options. Even adults are sometimes helped by medication, and finding a good support group or ADD Coach can be life changing. Adults with AD/HD often have children who share the disorder, and these parents are eager to help their children to avoid some of the pitfalls they experienced as children.

So here’s a new thought: What if AD/HD is actually being underdiagnosed?