We worked with the schools from Day One. Angie was immediately put on an IEP (individual education plan) following her formal diagnosis at University of Massachusetts Medical Center. The schools for the most part do a good job providing accommodations but dollars are always a problem. They can only hire so many aids to provide 1-on-1 help.
Even before school starts
One of the things we do with Alex that’s essential for him academically is we actually have a meeting two weeks before school starts with his teachers and with Alex. We go to the school and we meet with them individually, so he has an idea of who they are, and they get to know him. The school has been receptive, I think. Initially my husband and I talked to the teachers about why it was beneficial for the school, and as a community, and they see the benefits. It’s been really beneficial because it eases some of Alex’s anxiety for the upcoming year. He feels like he gets to know them as people before he starts school. He gets to ask them questions about what to expect, especially for the major transition years, like the years that they go from a classroom, to when they first start switching classes. Having more teachers involved? It was absolutely essential.
Helping fit in
I remember one year when we first moved to this school, one of the questions Alex asked was, “What kind of notebooks do the other kids bring?” because he didn’t want to feel singled out. I think that, for kids that have emotional issues, any time you can ease their anxiety, you help them to be able to focus on controlling their issues. We ask them to focus on controlling themselves so much, so if we can ease their anxiety in other areas, I think we help them tremendously. Things like enabling them to wear what they want to wear, or feeling comfortable in that way, I think helps them tremendously.
Chewing gum helped
Alex is hyper, very hyper. He has these ADHD symptoms where he’s just kind of bouncing off the walls. Gum is an incredible stress reliever, we’ve found. We actually worked with the school to allow him to chew gum, because it was a great stress reliever for him, and something to do. Also, he’s allowed to draw in his classes–they actually let him doodle.
Responding to “We can’t handle him”
He went through three preschools because they couldn’t handle him. It was only when they entered into the public schools and they couldn’t refuse them did he finally stay in school. At the time there were small neighborhood schools that still existed in our city and the small neighborhood schools don’t have children with special needs. That was just the thought process back then: they didn’t exist and it was not occurring, even though Ryan was doing things like flushing kids’ glasses down the toilet and crawling under the tables. The school would call me to pick him up. That was their response. “Come bring him home we can’t handle him.” At first we would not go pick him up, and then I realized he was getting so stressed out by being in that environment that we did. There was a special needs program in a different elementary school that actually did have special needs kids. So we went into that program and it actually was a wonderful classroom. The teacher was very therapeutic, very kind and understanding.
Meetings are important
We did lot of meetings with the school, a lot of meetings with the principal and the school adjustment counselors. We had almost every other week team meetings with our DMH case manager and the therapist, and ourselves and the school. That was definitely a good thing. I can’t say enough about that piece of it. If there is anything we walked away with, it is how important that team piece was and that was consistent right through his high school years as well. Because I was working in the field I knew the people to talk to and what to set up, and we realized we kept everyone on task by holding them accountable. We ended up meeting monthly but for a period of time it was every couple of weeks. When everyone knew we were actually going to hold that multidisciplinary meeting things went much smoother for Ryan. Initially he was too disruptive and he couldn’t sit still for long enough, he was too unfocused, he would crawl under the table when he was there. Once his medication got regulated he actually participated. I’m trying to think how old he was when he started taking charge of his own goals; I want to say 14 or 15.
I have to credit the guidance counselor for really pushing to have Megan tested. Then I, of course, called every week to say, “Why isn’t it happening?” And then when it started to happen I had to keep calling and asking where the results were. That took 6 to 7 months to finish. We lost most of 10th grade because of it. Then she really improved dramatically in the last two years of high school.
Press school to do testing
I went to see the guidance counselor and said, “Something is not right. Something is really not right here that this child should struggle so and study so much and still come up with a D or an F on an exam. It can’t be right.” It was the guidance counselor who suggested that we have Megan tested. I’m telling you I was a parent in denial, I thought there was nothing wrong with my child. I think we pushed for the testing in the fall of 10th grade and did not get the testing done until the winter of 10th grade. A very good friend of mine is a clinical social worker who does a lot of work with young children and ADHD. She’s the one who said to me, “You need to press the school to do testing.” She said, “Don’t let them just stop at the basic; ask for a full neuropsych exam.” I’m so glad she did because I would have not known my way through this. She really knew the things I should be asking for. That sort of tells me that most families operate in the dark. If you don’t have someone who says to you, “These are the things you should be asking for” you don’t really know. That’s a frustration. I was really fortunate to have someone to point those things out..” I’m so glad she did because I would have not known my way through this. She really knew the things I should be asking for. That sort of tells me that most families operate in the dark. If you don’t have someone who says to you, “These are the things you should be asking for” you don’t really know. That’s a frustration. I was really fortunate to have someone to point those things out.
Tutoring and advocating
My husband teaches in our school system, so a lot of people knew him. That helped. We always brought the private tutor we had hired with us to every single educational plan. And she would make herself available to Nick’s teachers as well. Now, we were paying the tutor, not the school. I think that because he’s not a behavior problem, and he’s just one of those out there friendly kids, the school wanted to help him. I think it’s when the kids have behavioral problems that it gets harder. We’ve had to advocate in terms of explaining to the school that because he’s not falling off the chair or socking the kid next to him and pushing and shoving, it doesn’t mean he doesn’t have attentional issues, you know? He can be politely staring right through you, planning a social event for that night.
A separate classroom
She is in a Special Ed classroom, a substantially separate classroom so all the kids in there are special needs so they keep a pretty good watch on her. They bring a specialist in once a week that does work with the kids on social stuff and takes a look at them. Emma was in a different classroom last year so this teacher, her current teacher, had gone to visit her in her old classroom to see if she would be a fit. They observed her several times in the spring and now she has her in her classroom in the fall.
You have to advocate
You have to very much advocate for the kid at the school, and I think the older they get, the more you have to advocate. I’m finding as Lindsay gets older, the school has an attitude that, “Well, she’s thirteen now, she has to take more responsibility in her organization.” But the problem is, for my daughter, organization is a huge, huge issue in her ADHD. You can’t make her be organized. I don’t care if she’s thirteen; she can’t do it. So my response to the school was, “You know what? No. SHE CANNOT DO IT. Her 504 status says you have to have someone check her homework plan. You have to have someone check her homework papers and make sure they’re passed in. You have to make sure she has the appropriate books and work papers to come home with her. That’s what her 504 plan says.” Her guidance counselor said to me, “Well, I don’t know if her teachers will do that.” What do you mean you don’t know if the teachers will do that?! That’s in her plan! Yeah, her teachers will do that! Or else, sue the school system.
You can’t make them acquire skills
Some things, as ADHD kids get older, they acquire. Some things they just have not acquired and you can’t make them acquire it. And the school expects that they’re just going to acquire skills that are not there. And it’s very hard, because it would be nice if Lindsay had the organizational skills of a thirteen year old. But there’s no way she does. She just doesn’t. And the other moms that I’ve talked to here are in the same situation. The kids just don’t have them. They do something, and they leave the paper here, and they start something, and they go on to the next thing, and they forget what they did and where they put this paper, they start to write down a homework assignment, and they get sidetracked, so only half the homework assignment is written down, and they don’t finish it. They’re so easily distracted.
One of the things in Lindsay’s plan was to have her go to each teacher at the end of the day and check in with them and make sure that the homework was written down. That didn’t work, because there were too many kids at the end of the day trying to get the teacher’s attention for something. So I said, “It’s not working. She can’t be responsible for trying to track down these teachers and getting out to the bus.” So we had to switch it around so that at the end of each class the teachers had to meet with her, and make sure that their homework for that class were written down, and the worksheets were in the folders. When I do requests–I had put down on her 504 that I want to meet quarterly with the teachers–it’s not followed up. You have to be the one to call. What I’ve started to do now is make appointments ahead of time for the meetings.
She gets defensive
Lindsay can do the work, but the forgetting things, and losing things, and then getting in trouble for it? I think it bothers her, and then sometimes she gets really defensive with the teachers, and she’s like, “Well, I have ADHD.” She’s like, “Leave me alone.” And they sometimes get mad at her, but I think it’s really a defense mechanism because she’s got people that are jumping on her. And she knows she loses the stuff and doesn’t pass in the homework. She knows she does this stuff, and knows people are on her back about it– I’m on her back, her teachers are on her back. I’m sure that’s part of her having depression now, dealing with these issues of being different than other kids, and having to deal with not being able to do these types of things that other kids can keep up with.
I think it has been more of an issue in high school than it had up until then just in terms of keeping up and keeping organized. Julie’s sort of got it down now, but when she first went to high school in ninth grade it was a real struggle to even remember where her books were, her papers, to turn her assignments in. It’s been a long haul that way. It’s not been so easy.
Independence is more charged
Of course the school nurse knows that Julie has ADHD. They always send you a form asking if your child is on medication. Her advisor knows. One of the things that happens when you have a kid with this kind of issue you have to take more care of them than other children. They require more organization from you. When you are good at it, like I am, you start filling in the blanks. In a way I’ve made it easy for Julie because I’ve gone to the school and told her advisor that she has ADD, but she’s never said anything to him. I think one thing that happens is that kids grow up a little bit more slowly. The issue of separating and becoming independent is a little bit more charged when you have children who need to rely on you more.
An amazing tutor
I was referred to a guy who had several tutors working for him and they specialized in kids with different learning styles. I really wanted him. The problem was he was so expensive and we really could not afford that. So he told me that one of his tutors was really good, that she was working on her PhD in English, and that she was working for him and that he thought it might be a good fit. He sent this wonderful young woman to our home. I’m telling you that it was a year and a half of a great experience for Megan. She’d come once a week just for an hour. But the tutor would ask her, “What are you working on? Where do you see you need to be more organized? How can I help you?” She would work with her on how to prepare for studying, how to organize herself, she taught her how to make note cards. The basics that some kids kind of figure out, Megan never had any of that. Megan was not a straight A student in her last two years, but she started getting Bs and B+s. It was no longer a “What if I don’t pass?” kind of thing. She felt so good about herself. She said she could feel a difference in the way teachers were communicating with her. She said it felt like they were talking to her like she was a really good student.
In terms of the organizational stuff around schoolwork, we had an IEP (individual education plan) done on Ryan right away as soon as we knew. So that was built into his learning center stuff, and then we worked on it around stuff within our family life.
The learning center
I asked Nick, “How do you feel about having to go to the nurse?” before we switched him to the Concerta, which he didn’t have to go to the nurse for because it lasts all day. And he said, “I don’t care. She’s really nice. I have a good time with her.” I asked him, “Do you mind having to go to the learning center?” He said, “Why would I? Why would I mind that? Half the school goes to a learning center. Not only that, I get my homework done, and they help me with it.”
No special treatment
All three of my kids did tutoring, and that was helpful, it was mostly the reading they needed to kind of catch up. The teachers are aware that they have ADD. When my oldest started a new school, I set up a meeting to talk to all of his teachers as a team and I said, “I just want to let you know, this is the situation, and I don’t want special treatment, because I just don’t think later in life that that’s going to help him. But I do want to know if you see any red flags–like he’s not getting something, or he’s having a lot of difficulty in an area; I want to know sooner rather than later.” Sometimes being in a bigger school they can get lost in the shuffle, so I did tell them that I wanted to just wanted to be made aware immediately so that I could deal with it whether it be extra help, tutoring, or approaching it a different way in class. And the teachers were great about it. I never really wanted special treatment for my kids, but, for example, like the tutor suggested, if you’re going to call on so and so, let them know “I’m going to call on you next” so that they have a minute in their head to prepare. They just need a little bit more time.