Today we speak to Bree Jackson, a mother and autism advocate from middle Georgia who has a parent support chapter called Puzzle Pieces of Love.

(music)

Narrator: Welcome to the Just Ask Mom Podcast where mothers share their experiences of raising children with mental illness. Just Ask Mom is a Mother’s on The Frontline Production. Today we will hear from Bree Jackson, a mother from middle Georgia. This interview took place at The National Conference of the Federation of Families for Children’s Mental Health in Orlando, Florida. There is some background noise from other events occurring at the hotel, please do not let these noises distract you from Bree’s story.

(music)

Dionne: Hello.

Bree: Hi.

Dionne: Why don’t you tell us a little bit about yourself, tell us how you like to be introduced?

Bree: Well, my name is Bree Jackson. I am an advocate for Autism. I have a parent support chapter called Puzzle Pieces of Love out of Macon, Georgia. I support all the parents in middle Georgia with kids on the spectrum. Mainly because when my son was diagnosed, everything was in Atlanta, and I had no services in middle Georgia except for speech therapy. So, that’s where I am.

Dionne: So, you’re in middle Georgia?

Bree: Yes.

Dionne: Do you like middle Georgia?

Bree: Some days, sometimes I don’t, sometimes I do.

Dionne: So, Bree tell us a little bit about your, not, tell us as much as you want about yourself before or outside motherhood? So who were you? What did you like to do? What were your passions or your interests, outside the capacity for caring for your child?

Bree: Right, before my son was born I was a very active writer. I liked to write fiction, science fiction, fantasy. I like adventure, and that’s whether it’s creating adventure, or going on my own. So, I loved to travel, and that was something I was able to freely do, because I didn’t have a child-friendly budget before my son was born. But, I liked to travel and I liked to write, so.

Dionne: You find any time to do that still?

Bree: My husband is very gracious and I get an hour of Me time every day, so I can write, I can go for a walk, I can take care of myself because my husband is also on the spectrum, and he knows I need that break for myself sometimes, and so.

Dionne: That is important. So, pretend you were talking to someone and tell us what you want them to know, you can fill in this blank with, anyone that you want you, to understand your experience and that can be doctor, teacher, lawyer, insurance broker agent, anyone or institution that you like, what would you like to tell them about your experience, as a mother of a child with Autism?

Bree: I think I have two different answers to that question, I would talk to mothers first because I remember getting my son’s diagnosis and my first thought was I messed something up, and it was my fault. And every mother needs to know that they’re not a failure. As long as they go through life fighting for their child, even if you win or lose the battle, they didn’t fail their child. So, that’s one thing I think should be said, the other part would be, elected officials and insurance companies and they need to know that if they’re going to implement health care, and put their feet into health care, and spread it out, and make policy on it, they need to know that there are people out there, who suffer invisible diseases, and invisible illnesses that you can’t see on the outside. And they need to be treated with the same attention and respect that you would treat cancer or Crohn’s disease or ALS and it’s really important to know that even if it’s not something that they can put a bandaid on, it still deserves to be treated.

Dionne: Right. Ok, So in your journey with your child, what has been difficult in the past, in trying to get help for your child? Tell me about, tell me a story, tell me something about?

Bree: Mainly, insurance coverage, would be my biggest hurdle, with taking care of my son. When I was, when he was first diagnosed and we were at the speech therapy clinic and he’s getting his speech his and OT five times a week and about five weeks into it, they stopped me, and there like, “Ok, well you owe this much money today” I was floor boarded because at that point I had been paying these twenty dollar copays and we were fine and they said, “Well, the insurance no longer covers” he was only covered for twenty-six visits and you’ve run out of those and this was like, in July. So, I still had the rest of the year to get through, and I had no way to pay them for two, three hundred dollar visits, every day and I called my insurance company and it was, he has an official diagnosis, we were referred for therapy because he has Pervasive Developmental Disorder and he can’t speak. He needs to learn how to speak and to them it wasn’t important, they told me that autism did not qualify as a primary mental health diagnosis and that he had gotten what he was going to get and there was no way for me change it and I asked about getting new policy, a new policy with my healthcare when open enrollment happened and they said that there was no coverage that would allow me more than what I was already getting. So, that was, that’s been my journey and thankfully, my son has progressed and I fought that budget battle and the financial battle and that’s been a five and a half year journey and now he’s down to one therapy session every other week. So my insurance does cover it because I’m only using twenty-six visits. If he needs extra, his school is absolutely amazing and I’m very blessed that he got to where he is because it was through a lottery that he was chosen for this school. So, they provide a speech therapist, if he starts to struggle in school and they provide an occupational therapist, who actually got him to graduate from that occupational therapy. He went about two weeks ago, he graduated from occupational therapy because he could write his name without it going outside of the lines, on the notebook. So, that meant so much to me and he’s eight years old now, and he’s a doing great.

Dionne: Oh, that’s awesome, that’s awesome, did you keep it?

Bree: I did. It’s framed up, it’s on the wall, actually like a picture is.

Dionne: That’s great, I would have framed it too. So, there’s a lot in there. What would you say worked well? I mean if you had to tell us, in all of that, because there’s a lot of good stuff.

Bree: Yeah, what worked well was, I got into that school and it’s a charter school in Macon, Georgia and it’s, because Bibb County has a very bad school system and I know how blessed I am because if he hadn’t of gotten into that school, he would’ve been in that pool, and fighting for an IEP and a 504 would have been the battle of my life. But this school he got into it’s in kindergarten he had a RTI because he was too young for IEP. So, we got the RTI and when first grade happened, they were like, well we see he is on RTI, do you want a 504? I said, sure we’ll put him on a 504 and we’ll get all this written down and now he is in second grade and as soon as I walked in, the teacher was like, as soon as I saw his name on the roster I saw he matched up with a 504 and I already looked through it and I just want to know if there is anything you’d like to change?

Dionne: Wow.

Bree: And he’s been, this year has been the easiest school year ever, because he’s got it, and they’re prepared, and they prepared themselves over the summer, and I am very blessed to have a school system that focuses on that.

Dionne: Wow, wow, that makes a huge difference.

Bree: Yes, yes it does.

Dionn: So right now, would you say are you swimming, drowning, or treading water?

Bree: Now, I’m swimming. I know what it’s like to drown, and I know what it’s like to tread water, and just barely be able to breath, every few days. But now, I’m surrounded by natural supports and I have this organization now, where I’m raising money to pay the therapy debts, to the people in our community. Because we have, I have bikers who are paying to ride their motorcycles, so that they can give that money to people who need therapy and I have a Tupperware lady who set up a fundraiser for my fund, so that I get forty percent of all of her profits for the next month and I have Avon ladies who donate baskets, so that people will pay for raffles and I have all these people coming to me saying, “We’re going to help”.

Dionne: Oh, that’s wonderful.

Bree: And so, all these Autism families in the community, that know who I am now, they’re like, I need help, can you get me help and its yes I can because I have like, fifteen people who are ready to give me money, to help me pay your bill. So, I am swimming now, and I am so grateful for it. Hopefully, I can help other families start to swim too. 

Dionne: That’s wonderful. That is wonderful. So, you talk a lot about, I mean, as moms we have to be fierce advocates, for our children. What’s your self-care routine? Or your survival technique?

Bree: My survival technique. I had to have that because my husband was not actually diagnosed until about six months after my son, because our generation, kind of swept mental illness under the rug and his parents were the type of parents that were, it’s a discipline issue, we’ll take care of it, it’s a discipline issue. It never went away. So, now I deal with that on a daily basis of getting him to where he should have been fifteen years ago and I have to, I keep my son on track and I keep my husband on track and he supports me taking care of myself. So, I get to take my long walks, or I get to read a book, or I get to ride, or paint, or I get to take myself out to dinner, just by myself, so I don’t have to explain to the waiter that neither one of them can eat anything with salt on it, because it has to be so bland, so they can take it. I don’t have to explain, can you turn the lights down just a little bit, because it’s too bright for them. The noise is awful, can you please move us to a different table. I don’t have to do any of that. They give me my time to myself, at least once a week, where I can just go out and breath and have this conference, I get to go to every year. I get to be with my tribe of people who know and understand what my life is like and my husband I get a Spring vacation, where I get to go up to Canada and visit my best friend for a little while and I just get to be me and I get to go ride my bike to the park for myself because the exercise is a thing for me, I like to cruise on my bike and just breath and I’m very well taking care of my husband, makes me take care of myself.

Dionne: Good, very good, very good. In all of this, what would you say is your most laughable moment, the moment that you just have to sit down…

Bree: You just have to laugh at yourself.

Dionne: …Laugh at yourself.

Brei: Recently, I had said my son was in occupational therapy in school for handwriting because his motor skills are awful and he’s slowly improving on them and in kindergarten, it was “Miss, can you come in? Ms. Jackson your son is struggling with his handwriting we can’t get him to write it right” and I go and like four IEP meetings in his kindergarten year and his handwriting is so bad can you please work with him on his handwriting and so ok, and first grade, “Ms. Jackson, we need you to come in, Brayden not doing good” he’s just not. And in second grade, his teacher calls me, and she says, “I want you to come in for a 504 meeting, to talk about Brayden’s handwriting” and so I got my little notebook and I started making my notes about how upset I was and I was about to go into mama bear mode and we’ve already had this discussion and it’s in his 504 and I was ready to just repeat myself for the eighteenth time, since he started in school and she sat me down and she goes, “I’ve got to show you something” and she pulls out his handwriting journal and that’s when she showed me and she said, “I have to give you this” and handed me the certificate for him graduating from occupational therapy and I just, I didn’t know what to say, I was “I came in here and I was so ready to be mad at you” and then I just had to sit back and laugh at myself, because I was so worked up and I was so angry and then it was just, “we’re going to have a little celebration that’s why I called you in here”. So, I had to sit back and laugh at myself because I automatically switched to mama bear mode, and I shouldn’t have.

Dionne: It’s so easy to do.

Bree: It really is.

Dionne: It is, it’s so important.

Bree: It is.

Dionne: Thank you very much, is there anything else you would like to share, anything else you would like to say before we wrap this up?

Bree: I really appreciate what you guys are doing with all of this, it means a lot.

Dionne: We appreciate you sharing. We really, really do. Thank you very much for sharing your story with us and you know, enjoy the rest of the conference.

Bree: Yes ma’am, you too. Thank you so much.

Dionne: Thank you.

(music)

Narrator: You have been listening to Just Ask Mom, copyrighted in 2018 by Mother’s On The Frontline. Today’s Podcast host was Dionne Benson-Smith, the music is Old English, written, performed, and recorded by Flame Emoji. For more Podcasts, and this, and other series, relating to children’s mental health, go to mothersonthefrontline.com, or subscribe on iTunes, Android, Google Play, or Stitcher.

(music)