Advocate for Your Child: Assessment to Intervention

I'm so excited to have one of my good friends, Dr. Brittan Barker here for an interview with me on my blog and podcast. 

I love her so much, and she's like part of the reason that I went to grad school myself. Her educational mind inspires me, and her parenting mind inspires me. So she got her Master's degree in cognitive development psychology and then her PhD in speech and hearing science. 

She’s an assistant professor at Utah State University, in the department of communicative disorders and deaf education. 

What is the process of advocating for your child from assessment to intervention? 

Well, that's a great great question. I think the first step is to recognize that in the United States when kids are part of a public education system families should know that if they make a choice to put their child in a private school, there are different laws and requirements. I'm talking about public education, which also includes Charter Schools cuz it's half public-funded half private-funded when a kid is in a public education system. They have all sorts of amazing rights as children and members of our great country. And so what parents need to know our the laws and the rights that are afforded to their children.

This is a huge complicated list of official public laws and is often way harder to access than other information, but there are great web sites out there that incredible Educators and experienced families have gone forward and put together to help educate other families. So to begin with them if you have any sorts of concerns about your kid, maybe your kid seems exceptionally bright. Maybe your kid seems like they keep flipping numbers around and although they can do the math. Any gut feeling that a parent has had a should act on.

Any gut feeling that a parent has had a should act on

So in the United States, it is a law in the public school setting if a parent has any concern that they formally write a letter to change their school the principal in particular and say they would like a full assessment of their child to indicate how they believe that concerns. They have about them are inhibiting their success in the classroom.

So maybe it's my child seems to wiggle a lot and get up and move a lot. She gets in trouble for talking trash appears are not keeping her hands to herself. I'm really worried cuz it seems to be affecting her success in the classroom parent should write this formal letter and ask for what's called off full Psycho-Social educational evaluation.

When a parent starts the process moving with a formal letter the school because of federal and state law is Revolt wired to do a full evaluation. So even if you're the parent says my kids let hearing very well the school is required to look at all of the education of that child in all of the skill sets of the child after the school does a full psychosocial educational evaluation of the kiddo the parents will be given a huge packet of those test results and technically the school and the individuals who are part of that testing are required to meet with the family if indeed the child has special needs that could be supported in the classroom by law. Then the family can set up what's called an individual education plan.

An individual education plan is a contract with the school and special education providers to help your child meet very explicit goals that are decided by the family home and the people who are providing services in the school and it's a contract between the school and the family that says we are going to engage in special things to accommodate your child wage. They can be successful that could be anything from we're going to pull your child out of the classroom three times a week and work on Phonics and help them be a better reader or it could be something like we're going to support your child in a social skills group and teach them how to play nicely with their friends.

The school then is required by law to meet at least once a year with the family and the kid and to continue to evaluate the successes of the child in any roadblocks. The kid might be facing during these IEP meetings is when the family and the school can negotiate different choices interventions assessments, etc. For the kid gets the point if your kid is successful enough and they're no longer need of support. Then the services can be stopped by the choice of the family or the school depending on the situation and the child should continue to move forward.

When we talked about really little kids from birth to three you might be asking yourself. Well, this is great if my child's in kindergarten, but I have concerns about my two-year-old like you did Lauren.

What family needs to reach out to is every state by federal law there is a program that is available and paid for by us as taxpayers that support any families that have concerns about their children from the age of zero up to three years old. You can call this special hotline again, it varies from state to state and you can tell them what she concerns are and professionals will come directly into your home and do a full evaluation of all of your kids’ skills and tell you where your child might need support or birth rate all the successes they're doing and tell you your kid is a typically developing healthy child.

After that, if your child indeed needs some support what can be put in place is called an IFSP. So this is a family service plan. That's like the IEP in elementary school, but it's a contract with care providers from the state. And the region that says this is how we're going to help your child succeed the goals that were going to put out for your child and the ways in which we're going to make sure your child reaches these goals. All of these are incredible opportunities and services that are afforded to all of the people of the United States of America. The catch is that parents have to know that these opportunities are afforded to them and it is often the parents’ responsibility to get the opportunity started. That's the first step in advocacy and following your guts to ask for someone to step up and evaluate your child.

Question: the formal letter that you sent is that an email or you send it Mail stamp to the principal's office?

Great question. If you if parents Google how to write a formal letter to my school asking for my child's evaluation. You can find incredible templates. In fact, I'll even share with you Lauren and we can include it in the notes of the podcast some of my favorite websites to help parents get that started. 

My recommendation is to have a formal letter. So it's on a formal dated piece of paper that can be printed out and shared with others has an official signature on it. But then attach that to an email. Or if you're able to print it out and hand-deliver it to the school. It's never going to hurt you to have multiple paths that are date and time-stamped. What parents don’t know, is by state and federal law, there are very strict time limits on when each of the educators is required to take action on request service. So we need to have a paper trail that says this happened on this day that you only have 12 days till the slow response. So on and so forth. 

This is seriously going to change people's lives, because even when I posted about Maelie’s Early Intervention, which is totally free for the assessment (and then you may or may not have like there's a sliding scale of like services you can pay for through the state), so many people were like, “wait. where do you did you hear about this?” 

I learned it in my education because I was in the Child Development field, but a lot of people don't know about these amazing resources available for free by law to everyone in the United States amazing.

In the Up-to-three programs there's loads and loads of research that show that when parents follow their gut and they have this early intervention that it really helps these kids grow up to incredible adults, right? And so when you can get intervention and learn new skills as families early on we are setting up a path for success for these kids and quite often children who get the early intervention in the home before Age 3 depending on their needs oftentimes. These kids don't need special education Intervention when they get into school, which is amazing. 

Okay. So when I first got intervention for Maelie, I was like a little bit embarrassed because I'm a behavior specialist and I know all these things about Child Development -how could I have failed my child, but then I realized like early intervention is the best thing I could do for my child and it's not about anything I did wrong with her speech. It's just that she needed more support than was typical for other kids her age. 

How did you feel when you realized you had to be an advocate for your child?

I think a lot of my feelings were similar to yours. I was a bit surprised and shocked that these experiences I had learned so much about in school and had helped other families with were now happening to me. It was very it was a very valuable lesson for me to know that I can be really supportive as a professional but when it happens to me as a mom, I still have the same mom feelings. There's shame — there's questioning. There's guilt there's anger and like I said before there's exhaustion. It's hard to Advocate and try and learn all these new things that you didn't even know there were words for before you had these feelings about your kid.

That being said it's interesting when you think about my partner. He had very different experiences. He's a computer programmer and his feeling instill his feelings are so different from mine because his experiences have been so different.

One of the issues I think similar to how we talked about person-centered care and our old mindsets from the decades ago of that. The doctors are the experts. I think it's a similar thing that has been happening in the United States as well. There's been a really long time that people who are different and have disabilities whether it's mental health issues or physical issues we have often push these individuals to the sidelines because they're different and might make us feel uncomfortable or from a school standpoint. They require extra support.

I'm so proud to be alive at this time. We're slowly changing this perspective in our country. We're recognizing that everyone comes to the table with differences and these differences can not only be acknowledged that they can be celebrated and often times these differences don't really contribute to us being different from the other human beings at the table or the other than the preschoolers at the snack table. It's hard for us as a country and as a culture to shift that perspective, but I think it's happening.

One of the ways to do that is as parents to follow our gut and to realize there's nothing wrong. There's nothing bad about discovering your kid needs help. We don't carry shame with us when we realize our kid needs help transitioning from training wheels to no training wheels on the bicycle. We grabbed a towel we run behind them. We make sure their ballads we can do the same thing when it comes to the intellectual and social and educational and physical needs that they have

But there's still a lot of things that we’re working towards in this country to make sure other people understand what these differences are these needs are and how bout to bring our kids into the fold in the same way. We would bring any other typically developing kid.

That being said, I think it's important for parents not to forget that in family-centered care. They are at the center of care. I would encourage parents to be very very kind to themselves. I would encourage parents to know that they're going to feel a huge array of emotions and all of those emotions are right in okay for them and their situation I want parents to also know that if they feel like they need help their resources to help them navigate the situation and I'm talking emotionally.

I'm not talking about how to Google: what do I need at my IEP meeting. Lots of times we as caregivers especially with caregivers who are providing support to families and parents of kids with special needs. We forget how the parents are and we forget the load that the parents are dealing with.

Make sure that your pediatrician or your in-home speech therapist is asking how you're doing. And if they're not asking how you doing. It is apparent to make sure you tell them and ask for support when you need it. Lots of the research out of my lab lately has been looking at and gathering stories from parents who are affected by hearing loss and raising kids particularly with hearing loss. And what we notice is that every single parent tells a different type of story and some parents tell stories that took off really terrible and end up really redemptive and good and celebratory, but there are still those parents who have a really rocky time even as the years pass on.

I just hope those parents know that they can get mental health support. They can get group support with other parents whose children are affected by similar disabilities. The parents need to take care of themselves just as much as their kids and there's nothing to be ashamed of or embarrassed or feel guilty about these are our kids and they happened here for very specific and special reasons and it's our job as parents to support them just as we would if they were learning to ride a bike.

I love that. That was so good. I love the bike analogy too. Because like if they're learning how to dribble the basketball we just help them. We don't shame, where when they're learning like how to get through difficult behaviors are like having a tantrum or crying on the floor. We just say, oh go have a time out. But instead we need to look at and say what skills they need to get through this. 

That's what I'm all about. 

Find More from Brittan

The easiest way to find out more about Brittan and some of the work she does, especially our research would be at our Labs website. Her lab at Utah State is called the Aural Rehabilitation Lab. USU’s Rehabilitation specifically supports rehabilitation for people who are affected by hearing loss.

Website is www.BrittanBarker.com.

Instagram @auralrehablab

Website Supports

- Institute for Patient- and Family-Centered Care https://www.ipfcc.org/bestpractices/sustainable-partnerships/background/pfcc-defined.html

- Dr. Barker’ Aural Rehabilitation Lab at USU  www.brittanbarker.com

- Baby Watch Early Intervention program for children aged 0-3 years who live in Utah http://health.utah.gov/cshcn/programs/babywatch.html

- How to find an early intervention program for children aged 0-3 years in your state (English) https://www.cdc.gov/ncbddd/actearly/parents/states.html

- How to find an early intervention program for children aged 0-3 years in your state (Spanish) https://www.cdc.gov/ncbddd/spanish/actearly/parents/intervencionTemprana.html

- How to request an initial evaluation for special education services for your elementary school-aged child (with model letter; English) https://www.parentcenterhub.org/evaluation-2/

- How to request an initial evaluation for special education services for your elementary school-aged child (with model letter; Spanish) https://www.parentcenterhub.org/carta-evaluacion/

- What is an IFSP? https://www.understood.org/en/learning-thinking-differences/treatments-approaches/early-intervention/ifsp-what-it-is-and-how-it-works

- What is an IEP? https://www.understood.org/en/school-learning/special-services/ieps/understanding-individualized-education-programs