What to Do When You Notice Developmental Delays

Jill Hanon, Moderator of the PVMOM Special Needs Forum

As a parent, you are not the paranoid type, but you’ve been wondering about one or more of your multiples lately. They are not hitting milestones on time. While your pediatrician assures you that every child develops in their own way, you suspect there’s more to it. You may be right. Multiples born prematurely or with low birth weight are more likely than singletons to experience developmental delays. For a variety of additional reasons, twins are more likely to have language delays than singletons. It might be time for some intervention.
This month on the blog, I interview the ever-gracious PVMOM Jill Hanon, who moderates our special needs forum on Facebook and is mom to two seven-year-old boys. Both of them qualified for interventions through AZEIP, a state program that provides support to toddlers. Jill walked me through the steps of finding support for kids with developmental delays. Because she is such an amazing fount of knowledge and advice and I couldn’t bear to cut any of it out, this will be a four-part blog, with a new part released each week. The first installment covers AZEIP. Part two delves into services and school support for older kids. In part three, we’ll learn the art of gracious advocacy. Part four dives into the deep waters of the emotions and relational challenges of parenting special needs kids. No matter where you are on your special needs parenting journey, there’s support available. Let’s start at the beginning.

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Erin: What should I do if I notice delays in my young kids?
Jill: You can do what I did. I self-referred to AZEIP on their website when my boys were 18 months old. Your pediatrician or other people can also refer you. It took about two weeks to hear back.

Erin: So you can fill out some kind of screener on the website?
Jill: Yes. The program is Arizona Early Intervention Program.  It’s a department of the Department of Economic Security. Here’s the link: https://extranet.azdes.gov/azeip/azeipref/Forms/Categories.aspx

Erin:  AZEIP calls me back and schedules an evaluation. What can I expect from the evaluation?
Jill: Depending on what your concern is, they will send someone out to evaluate that specific concern. They may or may not notice other things. In our case, we were concerned about a speech delay. They send out a speech therapist and a coordinator. The important thing to note is that they ask a lot of questions: “Does your child do this? At what age did your child do that?” If your child does it, but not often or not all the time, your answer is, “No.” Because they have a scale and they are evaluating your child and if you say, “Yes,” but it’s not all the time, then they should not be evaluated as having accomplished that skill. That’s why it’s important to say no. If they’ve said “Mom” once and never again, that’s not the same as saying it all the time. Our impulse as parents is to brag on our kids and put them in the best light, but that’s not what you want to do in the evaluation. You want a really good representation of what they are actually doing.

Erin: What ages of children are eligible for this program?
Jill: I believe it’s birth through three for AZEIP. After three years old, they are transferred to the Department of Developmental Disabilities (DDD).

Erin: What costs are associated with AZEIP?
Jill: It is fully covered. All evaluations, services and therapies are free through age three.

Erin: So, let’s say they determine that my child qualifies for services. What kinds of things should I ask for? Do I have any say?
Jill: It depends on what they qualify for. If they do a full evaluation, they may qualify for speech, occupational therapy, physical therapy. They will make recommendations based on the evaluation. In our situation, we were evaluated for only speech. Two weeks into speech therapy, our therapist said, “Would you mind if I had the occupational therapist come and take a look at the boys?” And then they qualified for occupational therapy. As we went along, more and more things came up. And it’s not a situation where if you’re denied services, that’s it. Keep pushing. You can ask for them to be re-evaluated after a certain time period.

Erin: Does AZEIP give diagnoses?
Jill: They are not giving any diagnoses. If you have a diagnosis going in, that’s probably going to help you. You have to pursue that separately. Depending on what the evaluation says and your pediatrician recommends, you will want to consult with a developmental pediatrician, such as Melmed or PCH or SARC. I’ve seen wait lists up to six months or a year for developmental pediatricians. However, I know with Melmed, if you ask to be put on the cancellation wait list, you’ll get in much, much faster. Depending on the situation, whether it’s autism or other delays, there may be other resources to access.

Erin: Do AZEIP therapists come to my home?
Jill: In most cases, they’re going to come to your house. The coordinator refers your case to a local network of therapists based on where you live. Then the therapist from that network will come to your home. In rare cases, home therapy may not be enough. For example, my kids had occupational therapy in the clinic, but still covered by AZEIP.

Erin: What if I’m assigned a therapy provider, and I don’t think they are the right fit for my kids? What can I do?
Jill: You have a therapy provider, but you also have an AZEIP service coordinator, basically like a case manager. So if it’s not working, you contact that case manager, and they help you find a different provider.

Erin: How do you know if it’s not working?
Jill: There’s a whole process that they call “pairing.” So the therapist and the child, the first session or two, might not do a lot of actual work. They might play together just so they can get to know each other. Trust your gut. If you can see that your child is struggling with this person, beyond the actual work—because it will be a struggle to do the work, and they’re not going to want to do a lot of it at first. They are going to be spending a lot of time together. At least an hour a week. If you see there isn’t a connection, and this person is going to be in your house, and kind of become part of your family for a little while, you need that to work. And you need that person to communicate back to you as well. So there needs to be a connection with you, too.

Erin: Thanks, Jill! That’s it for today. We’ll pick up the conversation next week with what happens when your child ages out of AZEIP.
Jill: No problem. I wish I had had somebody to guide me through that first year. If I can help somebody else get through that so they don't have to struggle, that's my little bit of payback for the help I've received. I encourage any PVMOM parent with concerns to join the special needs forum, even if just to ask questions.