Day On The Beach Weekend. Saturday July 20, 2013, will be our traditional Day On The Beach, complete with kayaking, outrigger canoeing, floatation, beach wheelchair racing, live bands, pile of free food, and all of the stuff that has made Day On The Beach a 21st consecutive annual Santa Cruz tradition.
By Autumn Green from All in Need Newsletter May 2013
Sitting in the waiting room, waiting again, waiting for them to finish another MRI. It has been a couple of years since Yaakov, our 11 year old son, has had his last MRI.
At one time in my life, I would have wished one of those tests would have showed something wrong. Yet, every time I think about that guilt fills me up. But, the truth is if one of those tests showed something it would mean they would know what is wrong and we could fix the problem. I had a friend one time tell me I think more as a man then a women. I want answers so I can come up with a solution and fix it. I don’t mind talking about life and the problems but I don’t want to live in the problem I want to fix it. So, I don’t know if the need or the want of results is typical for a mother, but I needed them. Our answers were always not the answers I had hoped for or they would find something and they thought the results found could be the cause of a different issue, but after more tests, the answer was always no that isn’t the cause. Always the same, results of the tests never answered why our youngest son was so different than his brother and other boys we knew. At that time in my life of course my anxiety was always high, so scared of the answers we would receive, scared of the answers we wouldn’t receive, and scared my son’s life just wouldn’t be, wouldn’t be what? I don’t know what I was scared of if things would continue to get worse, if he would have a normal life, or wouldn’t get answers.
Today, watching him be put under; I realized how far we have come. We aren’t at the doctors or therapist every week. His life has changed so much and I am truly grateful for how things have improved.
So, what do I want the results to show now? Honestly, I am annoyed we have to do another test and more money is going out. Yaakov suffers from migraines and one time the migraine had stroke like symptoms and it was the scariest thing to see; your 10 year old son struggle in that way. The neurologist is having the MRI done to make sure there is nothing on his brain, but is doing it out of caution not because she really thinks something is there. So, this time I sit in the waiting room grateful for our insurance and believing nothing will be found and I am totally at peace with that.
Of course, I cannot help but think that it would it would only be us sitting in a waiting room because my son gets what is called complicated migraines, weakness on one side of the body and slurring of his speech. Neurology India Hemiplegic migraine, is listed as a rare disorder especially in the pediatric population. With that Medscape says it is estimated 3.5-5% of children gets migraines (this is just a typical migraine. Not saying people don’t suffer from them, I know they do because I am one of them.) And in The Migraine Trust they have published that migraines affect women 16% compared to migraines affecting men at only 5%. So of course, I cannot help but think only my son would have something else wrong with him and of course it has to be something that isn’t very common.
It isn’t that I feel sorry for him or myself, it is just another thing we as a family have to deal with. Yaakov is strong, and because of how tough he is it makes it that much easier to be strong for my Little Monkey.
I have no wise advice to make for those who are in similar situations. Like the old saying goes a day at a time and for me I hold onto the verse, For I know the plans I have for you, declares the Lord, plans to prosper you to give you hope and a future. Jeremiah 29:11. With all that Yaakov has been through I cannot wait to see the man that is being formed.
Nurse just walked in and he is waking up……..
The articles is may not be the belief of AiN Board Members or AiN, but only the writers.
As you may know, DREDF is representing the American Diabetes Association (ADA) with co–counsel Reed Smith, LLP, as intervenor in a case of critical importance to California schoolchildren with diabetes and their rights to diabetes health related services in school and during school–sponsored activities. The case was heard before the California Supreme Court today, May 29, 2013, and a decision will issue within 90 days. In American Nurses Assn. et al. v. Tom Torlakson as Superintendent of Public Instruction et al. (American Diabetes Assn., Intervenor), No. S184583, the issues involve whether designated school personnel who are not licensed nurses are allowed to administer insulin to students. According to coverage of today's oral arguments, the Court indicated that they may let non–licensed personnel give insulin shots to the estimated 14,000 diabetic students now in California public schools.
You can read more about the effect of this issue on families and students who live with diabetes in this recent article. As parent Barbara Wright states, "Parents and kids are already living with this disease 24/7," she said. "To place any more obstacles in our way is just so frustrating for us."
DREDF has advocated strongly in support of ADA's longstanding position:
Every child deserves the right to be safe at school, yet when children with diabetes are unable to self–administer the insulin they need to stay healthy, and if a school nurse is unavailable, they are put in a potentially life–threatening situation.
Without access to insulin, these children become dangerously ill and, long-term, face a greater risk of developing life–threatening complications. Because of their illness they often miss class and activities, leaving them without the same educational opportunities as their peers.
Many school districts in California believe that only school nurses can administer insulin at school, leaving children with diabetes without access to proper care.
With nearly half of the state's school districts not having a single nurse on staff, across the state, many children with diabetes are not safe at school.
California state law and federal antidiscrimination laws require schools to protect the rights of students and provide diabetes care to any child in need.
The American Diabetes Association's Safe at School campaign fights to ensure that trained volunteers are available in every school to help children with diabetes administer insulin when a school nurse is unavailable.
Diabetes experts agree that trained volunteers should be allowed to help students in need.
Across the country many states allow non–medical school staff to administer insulin. And, every day, outside of the classroom, parents, siblings, and babysitters safely provide insulin to the children they care for.
Numerous groups filed amicus briefs on behalf of the ADA including the US Department of Justice, the California Department of Education, the Child Care Law Center, American Academy of Pediatrics Section on Endocrinology, the American Association of Diabetes Educators, the California District of the American Academy of Pediatrics, the Endocrine Society, and the Pediatric Endocrine Society.
"The case is now on appeal, and the Court of Appeal has confirmed that the trial court's ruling is stayed until the appeal is finally resolved. The entire Legal Advisory therefore remains in effect. However, interested parties should check this Web site periodically for updates on the litigation and the status of the Legal Advisory."
By Robert Rummel-Hudson from SupportforSpecialNeeds.com
I feel like I want to talk about the events of last week, in which we revisited Schuyler’s IEP from a few weeks ago in order to put in place better speech and language goals than were originally presented to us. I want to talk about the shift in philosophy in her AAC use, how her verbal expressive language isn’t keeping up with what she’s capable of. I want to talk about how she’s been allowed to make some choices that she wasn’t quite ready for, and the work that lies ahead for her and for us. These are the things that have occupied my mind so deeply for so many weeks, so much so that the thought of actually discussing them in detail now feels rather daunting.
So I’ll simply say that conversations have been had, many of them. These conversations could very well lead to big changes, or they could provide a smoke screen, cover for returning to a way of working with her that has been easy, even as it hasn’t worked.
I guess that’s been the recurring theme. Conversations.
There were conversations in the original IEP meeting that were less than productive. Opening salvos, perhaps. “Here’s how things are going to be, and lucky you, dumb parents! All you have to do is sign!”
There were conversations that followed, in which our concerns were expressed, perhaps vigorously, about how Schuyler is communicating, how she is allowed to make herself understood, painfully, and what a very low bar was being set in school for what we should consider to be success. We talked about what she’s capable of communicating when she uses her iPad, and we handed out copies of the poem she wrote a few weeks ago, to teachers who were frankly shocked that the monosyllabic student they thought they knew had written such a thing.
Conversations were had about the future, and how Schuyler desperately needs a total shift in the communication philosophy being followed by every teacher who sees her. We talked about how that change might take place, and about what we want the school district to give. We asked for an outside consultant, one who’s been working with Schuyler and with us, to come facilitate a conversation, a workshop with the whole team. We were told that this was the job of the assistive technology team already in place. We met resistance.
Conversations took place, frank ones, about our lack of confidence in those changes truly being embraced without a facilitator from outside the system. Conversations took place that were difficult to hear, for both sides.
And Schuyler was there for every last one of them. Conversations were had about her, and not without her.
This past week, before the IEP followup, a very different conversation took place. Three of us were on the line; a representative of the school district’s assistive technology team, the amazing speech language pathologist with whom we’ve been consulting and who has come to know Schuyler as a friend, and myself. It was a very good conversation. It was one in which all three of us at one point or another faced ideas and concepts that were new to us. It was a microcosm of exactly the kind of facilitated dialogue that we’re pushing for, and pushing hard. It felt like success.
And the next day, there was the IEP followup. We pushed hard for our own communication goals to be written into the IEP, and we were ultimately successful. We also advocated for this facilitated workshop, but with no concrete decisions made. We made a solid case for it, though. Of that I feel relatively certain. The answer we hope to get from a dialogue like that isn’t one I could even quantify, I said. In a conversation of less than an hour the previous day, three of us opened our eyes to possibilities. A larger conversation? Those possibilities are unimaginable, if only people will choose to hear.
There have been so many conversations of late. Schuyler has been a part of most of them. The SLP with whom she’s worked remotely has had the most interesting perspective, because she’s never really communicated with Schuyler verbally. They’ve communicated via text message mostly, and so the Schuyler she sees is something a little like the fully realized communicator I’ve always imagined her to be one day. As if to bring the point home, she spoke to Schuyler on the phone the day before the meetings began. She got the verbal Schuyler, just brief words, yes and no and bye. She witnessed the kind of verbal expression that has served Schuyler so poorly at school for the last two years.
There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier.
Time was running out for Schuyler. Time is always running out for Schuyler.
So we have the conversations, and she joins them now. One day, she’ll lead those conversations, and she’ll do it with a voice that’s strong and autonomous and eloquent. There’s a lot I’ve gotten wrong with Schuyler, and more that I will screw up in the future. But these conversations? We’ll have these until our voices crack. Because ultimately, if we get this right, these conversations will begin and end with her. Article HERE.
We have to wait two months for our child's diagnostic evaluation. How can we prepare?
1.Learn more about autism. This will help you develop a list of questions for the visit and prepare to take action if your child is diagnosed with ASD. For starters, I highly recommend Autism Speaks 100 Day Kit, especially this section on diagnosis, causes and symptoms. Also see the “What is Autism?” section of the Autism Speaks website as well as the Autism Speaks Video Glossary.
2.Gather your child’s information. I recommend filling a folder with your child’s medical records and any previous developmental or behavioral evaluations your child has received. You might also want to bring your own notes on your child’s behavior, as you observe it in different places and with different people. It can also help to jot down some thoughts on what you consider to be your child’s strengths and weaknesses. Bring this folder of records and notes with you to the evaluation.
3. Learn what to expectat the evaluation. Some evaluations are done by a team of specialists, others by a single provider. In general, a developmental pediatrician or psychologist is the best qualified to make a diagnosis. However with training, other medical providers can competently conduct the evaluation. It should involve direct interaction between the provider and your child.
This should include a structured, play-based assessment called the Autism Diagnostic Observation Schedule (ADOS). Your child may also complete one or more cognitive, or “thinking skill” tests. As a parent, you’ll be asked questions about your child’s behavior and development. In addition, you’ll probably fill out one or more “checklists.” It can feel like a lot of questions, to be sure! Just remember that this information helps the professional make the most accurate and helpful diagnosis.
You should have a chance to meet with your child’s evaluation team to discuss the assessment and diagnosis. You should also receive their written report. In all, the evaluation will take at least several hours and more than one appointment to complete. (Also see the “Diagnosis” page of the Autism Speaks website.)
Read more ofDr. Lauren Elder's Autism Speaks article HERE.