Welcome to the fourth and final installment of our series on parenting special needs kids. This week, Jill Hanon, our PVMOM special needs forum moderator, gets real about the strong emotions that often come with the parenting process. You can find the previous installments here:
Part 1: What to do when you Notice Developmental Delays
Part 2: When your Children are too Old for AZEIP: DDD, Developmental Preschool, and IEPs
Part 3: Advocating for your Special Needs Children
Erin: Some parents describe going through shock, grief, or guilt when they realize that their children face extra difficulties. What was your experience, and how did you get through it?
Jill: It was hard. But I’m the kind of person who says, “It is what it is, let’s just do what we have to do.” Just tell me what it is and what I have to do, and I do it.
Erin: What has been the hardest part of parenting special needs kids?
Jill: The hardest part was about a year into it after their diagnoses. It was so tiring. The kids were melting down and having regressions. I felt despair sometimes, and would cry myself to sleep. I would think, “He’s never going to be normal but he’s going to be expected to be normal.”
Erin: How did you get through that time?
Jill: You just go through it. And you see progress. You see a path ahead. You focus on the little bright spots and the things that make life easier. Like for us, I made a giant schedule in the kitchen to keep track of everything. You remember that you are not in it alone. Get with people who can tell you, “You’re going to be okay. There is a light. You just have to keep going.”
Erin: What other advice do you have for people walking this path?
Jill: Get through the process of dealing with the emotions of the diagnosis as soon as you can, and start working on how you can help. Go lock yourself in the bathroom and cry it out when you need to.
Erin: How does parenting special needs kids affect marriage and co-parenting?
Jill: Sometimes one parent handles most of it and the other doesn’t really see it, or maybe accept it. I recommend that both parents stay involved in the appointments so you are both fully aware.
Erin: What advice do you have for keeping your relationship strong?
Jill: Communicate! Tell your spouse when you are at the end of your rope. Find time for yourselves. If your children are in DDD, you may qualify to receive respite care. Take advantage of it.
Erin: Jill Hanon, thank you for sharing so much of your heart, your wisdom and your experience with us this month. I know you have helped encouraged many families.
As I sat down to write this post I was overcome joy but eyes filled with tears. PVMOM has been a huge part of my motherhood journey and I hope some of you out there feel the same.
My story with PVMOM started back in 2015 -- my twins were just about to turn ONE and we had returned to Phoenix after a 6 month stint in San Francisco. I learned about PVMOM (from another member) when I was pregnant but never joined. I had really taken a step back from the working world and knew I would need to dive head first into making mom friends so got the courage to attend my first meeting - Favorite Things / Baby Addition. I remember walking into the room not knowing a single face, sitting in my chair and just hoping the person sitting next to me would say something. Most of you might not know this about me but I am actually very shy when around lots of people I don't know. As the meeting progressed it became very clear that this was a place full of moms just like me. Mom's that had sleep struggles, nursing challenges, work and relationships to deal with and the overwhelming sense that we had to do it all and be it all. I think I left that night and ran home to my husband as giddy as a school girl.
Shortly after that meeting was my first twin play date. A few of us gathered at the Biltmore -- threw down some blankets for the kids and instantly engaged in conversation all about this crazy thing called motherhood. To this day those moms on my very first playdate are still some of my dearest friends. We have had many more play dates these past 4 years just like that -- kids playing, moms congregating sharing the latest "omg guess what H did today?" PVMOM gave me this and gave me support through so many good and hard times. For this I am eternally grateful.
My role on the board started that same first year, as meeting planner. I worked hard to build a schedule of meetings that brought moms together and gave them some new tools in their mom kit. I remember my first meeting we got shoved in a tiny meeting room on one of the patient floors with a packed house and a wonderful presentation by a fellow member all about kids not listening! I got hooked pretty quickly and finally found an outlet that allowed me to give back and have something else to focus on besides just being mom. The second and third year I spent as your board President, alongside my partner in crime, Beth Gevirtz. Together we took this group places we didn't think we could. We grew membership, hosted so many fabulous events, sponsored meetings and even started the New Mom Mingle. We rocked the online auction both years and were even able to support a few other local non-profits. I say all of this not to toot my own horn but to showcase what something as simple as a mom's group has done for my life -- and countless others. I was very fortunate to be surrounded by an amazing group of women on our board that made all of this happen. The best thing about being on the board has nothing to do with all the numbers and wins but rather the friendships developed and the connections I have made with so many members.
My sole purpose for stepping into the role of President was to find ways to foster connections and relationships between moms. Being a mom of multiples is special and very, very hard. I remember feeling so isolated and lost in those early months and I never want a MoM to be left alone to figure out this wild ride. My wish for this group and each member is that you find a way to connect, get the support you need and then give back. It's the circle of life in some sense -- we all need the support of the moms with older kids but the moms with younger kids need us too. I hope you show up to events and let your kids explore in all the fun, enjoy a mom's night out because YOU need time too, and make it a point to attend the workshops because I can promise not only will you learn something but you will walk away fulfilled after spending a chunk of your day with other moms JUST.LIKE.YOU. And always know there is a board of directors standing behind this group and the door is always open.
To the current board, may you have a wonderful, fulfilling, exciting year! There has already been a lot of time and effort spent to get off on the right foot. There are no words to express how grateful I feel to have worked along side you and I cherish the friendships I have.
To our members, thank you for trusting us as we explored and played. So many of you showed up with smiling faces, silly stories and it always left me feeling proud that we could all stand together as PVMOM. There is nothing like this tribe, nothing like the power of a MoM and it's all because of our great membership. Cheers to 2018/19
This week, we pick up part 3 of our four-part series on seeking help for kids with developmental delays and other special needs. Jill Hanon, our Special Needs forum moderator, shares her perspective on advocating for our children, especially in a school setting. If you missed earlier Parts, find them here:
Part 1: What to do When You Notice Developmental Delays
Part 2: When Your Children are too Old for AZEIP
Erin: If I’m the parent of kids with IEPs, how involved should I expect to be? How much time will I need to put in to advocate for their education?
Jill: You’re going to get out what you put in. And it depends what your child’s needs are. I am super involved. There are times that I’ve requested IEP meetings because I don’t feel like there’s enough progress happening. You can always request a review in writing. There’s a specific time frame for everything. I think they have ten days to respond to you. I’m very hands on because the more I know the teachers and the therapists and everything that’s happening, the more I can carry that through for my child. You have to be their advocate for everything. If you have a child with special needs, you’re their voice a lot of times. Even if they are able to talk to their doctors as they get older, you still have to be there advocating on everything. If you don’t do it, no one is going to do it. Their teachers can only do so much, no matter how amazing and wonderful they are. And there’s only so much they can do without your specific request or approval. I’ve had situations where I’ve been sitting in an IEP meeting and teachers are staring at me meaningfully across the table like, “Ask the question!” and then afterwards they’ll come up to me and say, “I’m so glad you brought that up because I’ve been dying to say something, and I couldn’t.” There are certain things that school personnel can’t say or do unless you initiate.
Erin: What’s your advice for advocating for your special needs child?
Jill: Get to know the process as well as you can. Be willing to question the process. I’ve had to get the help of an education advocate, because I didn’t like what was happening with one of their IEPs. They were trying to kick him off before he was ready. All I had to do was throw around the name of the advocate and say we were going to meet with her, and that was enough. Sometimes you have to play hardball. I try to be gracious with the team. Because they work hard and go through a lot. But at the same time, there’s a process from their end that they have to follow. The more you understand that process, the more you can make it work in your child’s advantage.
Erin: Do you still need DDD if your child is receiving services through their school?
Jill: It depends on the kid. They might qualify through services through DDD but not at school, because services at school are based entirely on academic performance. Like maybe they can communicate okay and ask questions at school, so they don’t qualify for speech therapy at school, but that doesn’t mean they don’t need it. Then you become the chaos coordinator. Because you’re coordinating his 504 or IEP at school—a 504 is accommodations but not interventions and services like you get with an IEP— and doctor appointments, and DDD therapies.
Erin: Why do you need the official 504 piece of paper for accommodations when you could just informally ask the teacher to do it?
Jill: Because they are required to do it if it is on the piece of paper. And if you have more than one teacher, or you transfer, you need that. In our situation, my first grader has six or seven different teachers. So all of those teachers and administration have to adhere to that plan. Let’s say your child’s issue is ADHD. The accommodation might be putting up a folder so they don’t get distracted during a test. You might have an amazing team that knows what accommodations your child needs, but the more you know going into the meeting, the better the plan is going to be. The more benefit your child’s going to get. We’ve taken some of our DDD therapists into school meetings because they know what’s going on with our kid. The more collaboration you can have with that team, the better it will be.
Erin: Would you agree that it’s never too late to start the process?
Jill: Absolutely. If your gut tells you something, early or late, follow it. You are going to be your child’s biggest advocate. You know that child better than anybody, so follow that hunch. Even through five years of therapies and everything you can imagine, I’m still finding things with my kids that make me go, “HMMM. This isn’t working, I’ve tried everything else, the poor kid can’t read, let’s get his eyes checked.” And sure enough, there’s an issue. So it’s an ongoing process. And as one thing gets better, something else comes to the surface. A lot of things have the same symptoms, but different things are causing them, or masking them. Don’t be afraid to try different things, ask silly questions, try different doctors. Unfortunately there’s more and more families out there affected, and while we have a very long list of services available to us in Arizona, there’s a lot of people who need them. So sometimes there’s wait lists, sometimes you have to search out providers. If you’re sure something’s not right, don’t take no for an answer.
Erin: What would you advise someone like me, for whom it doesn’t come naturally to push back?
Jill: It doesn’t come naturally to me, either. I’m the wallflower when it comes to these kinds of things. But for me, it became, “If I don’t get this kid help, I don’t know what his life is going to be like.” And I have seen SO much improvement in my kids between the ages of two and six. I’ve had friends and family say, “Oh, I don’t get it.” And then they’d see them a few years later and say, “Oh my gosh!” You have to find things that work. You have to get them in therapies that are going to work for them, but it WILL work. There was a whole year where I was crying myself to sleep every night, feeling like my son was not getting better. And then it was like a light bulb went on. There’s always going to be struggle. It’s a spectrum and it’s a scale, so it depends on where you are on that, but there will be improvements, there’s something out there, and you just have to find it.
Erin: Do you have any favorite networking resources?
For autism specifically, the autism society of greater phoenix is great. There’s a parents of special needs phoenix or east valley Facebooks page. We have the PVMOM special needs forum. People shouldn’t be afraid to join it and ask questions. And for me, even sitting in the waiting room at therapy, talking to the other parents. I’ve gotten so much information just from talking to other parents who have been through it. The autism society has a parent mentor program if your child has been recently diagnosed. Other places do it as well. They will match you up with another family that has been through the process and answer some of those initial questions.
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