My son Elliot's journey, well, that's where we've earned our stripes as parents. After he was born with congential CMV, we were given a list of resources, including Medicaid, Social Security, and Early Steps. We aren't eligible for the first (even under the new earning guidelines), never pursued the second, and felt saved by the third. We should have done more through Medicaid at this point...keep reading. Through Early Steps, a host of therapists came into our home and later, his childcare to teach us all how to best help him. It was a godsend, and shaped our parenting so dramatically. Unfortunately this service ends when the child 3. So what then?
Public schools don't have 3 year-old programs. If your child is 3 yo, you can bring him to public school to receive this services, then bring him home/childcare. Your other options are private therapy, or if you're lucky enough to qualify and high enough on the wait list, Children's Hospital has therapy services and offers assistance to cover the cost. Orleans parish is just getting back up to speed, and is able to send teachers to your child's center. However, we reside in one parish (Jeff) and Elliot's childcare was in the other (Orleans) so Homebound wasn't an option for us. You can trust that your childcare center can use modifications and interventions. But truthfully, there's not enough education and training for these dedicated professionals to be able to fully understand the scope of many disabilities, and implement what's most helpful. And frankly, that's true of most certified teachers in this state. To get your child's needs met, most families create weekly schedules that are more complex than Sean Payton's best plays.
Elliot's 3 year of life and therapy looked something like this:
Ok-today is Tuesday? You go there, and he goes here, and at 10 oclock bring him here and then this afternoon, we'll pick up him and her and go there. Got it?? BREAK!
This included childcare at Abeona House, 2-3 mornings at Bright School, 2 afternoons at Children's Hospital, 1 monthly visit at Crane Rehab, and 6 specialist visits sprinkled throughout...all while we were pregnant with bundle of joy number three!
Can we meet you for a playdate, or soccer or gymnastics? Um, not likely.
You can see why we were looking forward to having a comprehensive therapy plan through the public school system when Elliot turned 4. This process was no cake walk either. First there was the Eval at the district office. This whole process was rather frustrating. One tester seemed exasperated with Elliot's distractability with her test questions (and my own guffawing)...after 2 hours of testing, lady. He's 3 and a half!
We were then given the option to have him in a half-day program for children with special needs. This half-day program idea is ridiculous. Who are these people who can do this? And does it really benefit the child? Even though the school program seemed wonderful, we opted out of this because it meant more days that look like the diagram above. Elliot spent another year in childcare with loving teachers and lots of play. Therapies too.
We put-off a lot of school searching with Elliot's participation in Abeona House. I can't imagine looking for suitable childcare for a tiny baby with special needs. This network of support and knowledge was critical in his development, and mine.
So when we were done there, the big world was waiting. And as I just got off the phone and learned even more about services for the disabled, I don't know if we'll ever know enough. There always seems to be another hoop to jump through.
In year 4, it was Pre-K 4 & THE IEP. The Individual Education Plan is where you explain what supports your child will need to be most successful in the least restrictive environment. It's where you think throughou how your child communicates, eats, pottys, learns, etc. Note to parents- You have to know your kid, and what works for him/her and include it all in your IEP. If your child has sensory issues and is adverse to certain kinds of toilet paper, include it.
The caveat: Public Schools only provide therapy and interventions that will help the child function within the school system. If he/she is lacking a skill that doesn't affect his functionality at school, it's incumbent on the parent to seek private therapy.
We haven't had a great experience with our child in the public school system. The absolute worst of it was my son telling me as he snuggled next to me at bedtime that his teacher had hurt his arm. I made clear to his teacher that whatever had happened was not OK with me, or with him. Mostly, I was grateful that I have a child that can communicate to me. I also wondered, and continue to wonder, how many times in this process will I feel like I'm playing a game with the system, with my son's teachers, as I dance between getting him what he needs and not pissing too many people off?
The good news, though, is that Elliot is in a typical classroom, with an aide who assists 2 other children and him. This is really the optimal learning set-up for him. However, the school's Special Ed kindergarten is a joke: kids are in the pre-K building, and "Go over for inclusion (groan) once a day, unless it's raining." The SPED kinder is a mixed-age group of kids 3-6. NOT FOR EL.
So what are our choices as we look at kindergarten? This question has led me on this year's journey of disappointment, frustration, and new insights. If sharing can spare you any agony, please read on:
-Public Schools: Just because public schools are legally required to serve your child, don't be lulled into false complacency-this is still a system that needs to be navigated, and like most anything, the squeeky wheel gets the services, or something like that.
Befriend someone on the inside...an administrator who can look at the system objectively, help you navigate the inner workings, and connect you (or give you the names) of the people you need to talk to.
Ask for what you want, or find out what you need to do to get it. I know Elliot thrives in an inclusive environment. I'll ask how this can happen in his district school, his Pre-K 4 school, and other schools 100 different ways to everyone I talk to. Each conversation yields some bit of info.
Don't foget advocacy groups: Families Helping Families will connect you with a lawyer for your IEP meeting if you're meeting resistence in having your child's needs met.
Start asking questions for the next year right after Christmas. That's when schools are in the planning and staffing stages...if you wait too late, your child and his needs won't go into the planning.
Kindergarten Special Ed programs are not in every school. Find out where these are to begin your search. If you want an inclusive program, you probably still want access to SPED services...- Talk to parents. Any time I see a parent with a disabled child, no matter what age, we have a conversation.
Catholic Schools
I am pretty sure that Jesus would open his arms wide for my child, but no so at most Catholic schools, and even when they do, there are limitations.
- Most that I have found don't serve SPED until 1st or 2nd grade, and even then, it's depending on the nature of the disability and how independently your child can function.
- SPED usually means a resource room that assists children who are slower learners.
- Many won't even accept children with 504 plans--plans ensuring minor modifications, like preferential seating.
- The one or two that we have learned will take our child are loving environments but expect us to provide a child-specific aide. Tuition (w/ no financial aid) + aide = No Way.
Child-Specific Aides
- You may be able to have one of these through your public school. Elliot currently is with a SPED aide in a typical classroom. I'm hoping he'll have one in 1st grade at his district school. (Erin, if you're reading this, any info you can add would be appreciated!)
- If you participate in Children's Choice (also known as the New Opportunities Waiver), you can have a child-specific paid in part by the gov't and you at the school of your choice. The caveat: You should've applied for a Medicaid Waiver NINE YEARS AGO...like, before I was even thinking about getting married. It's worth getting on the list, though, I hear from a parent who has a Child-spec at a local Catholic school. To do so, your local office of disabilities will come down an eval and see if your child meets the criteria for the Medicaid Waiver, and will send the Statement of Approval to the Medicaid Waiver office who will contact you. If you participated in Early Steps, they will post-date your application (which will bump us up a few years). Read this, and weep, Republicans. I'm sure these are the services you're always trying to cut. Guess what? We need them all.
- My friend's recommendation: child specific's will come through the agency. You probably won't like who they send out. She hired her person, and asked the agency to hire them too...they pay for this person together.
Private Schools
Like Catholic Schools, each of these vary, but for the most part, private schools have homogenous populations. Unless you have an older sibling participating in the school, you may not even have a serious conversation about whether your child can participate, as I found during my search for Ana's school last year. Even then, I'm imaginging these schools expecting you to provide a child-specific. The good news is many private schools offer financial aid. Again, no therapies are really available at private and parochial schools...you can't drop the ball on this.
What now?
We are most likely going to remain at H Park, but this crazy journey has helped me know that I need to write a letter requesting a child-specific in the typical classroom. If this idea is rejected, we will be somewhere else. Exactly where that would be, we don't know.
And before he starts wherever, there's a summer camp to find. *Sigh* It's exhausting, but what wouldn't we do for our guy? He deserves it all.
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