| My son was diagnosed with ADD |
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| Written by OHmommy | |
| Wednesday, 18 January 2012 00:00 | |
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I took this candid photo of my son just hours ago.
It. Breaks. My. Heart. Because it's a typical snapshot of our afternoons, balancing feelings of angst and hope.
I carried him under my heart for nine months (while listening to Vivaldi & avoiding sushi) and napped with his infant body on top of my pregnant chest for another nine months (not advised by pediatricians) until my belly, carrying his sister, was too large for both of us to be comfortable. He made me a mother just days after my twenty-fifth birthday. We've got this unspoken bond that was formed when he spent eighteen months listening to my heart beat and I to his.
Today, he was finally diagnosed with ADD although I knew that years ago.
There were so many supportive phone calls, tweets and emails that poured in this afternoon. "BEST. NEWS. OF. THE. YEAR." and "Great news!" all meaning (I hope), "Knowing what you're dealing with is SO relieving. Now, on to how to help him!" and "Hallelujah!! You hung in there for your child and finally a professional has your back!" and "Another step to better care!" and "I'm really glad you finally have an answer." The most discouraging were: "We just got there last week with my son and he is twelve!" and "I wish we had found the same out for my son before he was diagnosed in college. Would have made HS easier."
The biggest mistake I made in my parenting career was that I didn't trust my motherly instincts early enough; but instead, I let the award-winning public school district "lead me".
"Which wasn't the case in kindergarten when I sensed a problem and begged for extra help. Or in first grade when I begged for an IEP, sensing my child's frustration, but was told that my child met the "benchmark". By second grade well... " From: "I'm mentally exhausted & I really need your advice."
There's so much fuzziness in public schools. There's so much that I don't know. There's so much that I need to learn.
My son was diagnosed with ADD (not hyperactive) today. What do I need to know before I meet with the school on Thursday morning for yet another "intervention" meeting? Do we have a chance for an IEP although he's in the 99 percentile for math but failing reading? Do we medicate or deal with it? What do I want the school to do for him? Gah.... so much to learn. Educate me, please. I'm in foreign territory without a guide and I don't want to be blindsighted. It's time for me to lead. |
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| Last Updated on Thursday, 19 January 2012 18:56 |
Comments
But I DO know that you will need to walk in there with the imagery of ALL of us standing behind you, in full support of this new process.
Now she is on medication to help her concentrate and focus and for her that has been working. There are good days and bad ones and also around the same time we found out she needed glasses. Wow, what a difference in her reading.
The road hasn't been easy and socially she is a friendly girl who wants to be friends with everyone but some of her actions make it difficult.
Hang in there and give them hell at your meeting.
And Breathe a little easier because now you have an answer.
What he needs in an IEP for ADD is just that - what he NEEDS. Don't let them tell you that his intelligence & ability cancel out those needs.
I've said it before and it's worth repeating...you are a FABULOUS mother for Jay (and all your children). Being their biggest advocate is your strength.
Know that you have the power here, demand what you feel is best for your child, get the plan in writing and make sure they meet their obligations to him. Be his loudest, strongest and most determined advocate.
I agree with Cocobean. You know what he needs to succeed. Don't let them give him any less than their best efforts.
In hindsight, I would also remove him from classrooms where teachers refuse to meet his needs. This is all about your son, not what is easy for his teachers.
I know that I have power but, in all honesty, having 5 admin people infront of you "calming" you down during a meeting is really blinding and I need to know all of my rights. I've been researching everything online but I know that I've only gotten 10% of the info out there.
If you have any friends who are teachers, ask them what you need to know. What documentation you need from his doctors, what resources are available to him through the school district. There is a lot they won't tell you unless you ask. It's getting that information that is important.
Medicine--I'd wait. But, if/when you do try, be patient. There will be an adjustment time to find the right kind an dose. Also, he needs to be checked regularly to make sure the dose doesn't need to change as he goes through growth spurts.
IEP--Yes, you get one. Demand it. He has needs. It doesn't matter that they are only in one class. I've seen an IEP for emotional issues, etc.
Strategies--You should ask for actionable items that can be followed. For example, does the teacher need to make copies of her notes because he can't copy things correctly? Also, if the teacher is resistant, ask for a change. You're allowed that. Make the math teacher be in on the plan. She's the one who will be mostly involved right now. Ask the reading teacher what she does that she thinks helps.
To begin? I know this will be counter to everything you know, but let him drink coffee. Just not too much sugar in it. I won't say anything about brushing his teeth - his Dad is a Dentist - but it's necessary to be diligent about it so one's teeth don't stain from the coffee.
Kim
Be calm in meeting. Any emotions will take the focus off of the academic plan that you are jointly putting in place with your school. Remember, kids cannot be given an IEP, a diagnosis is necessary for that, so at this point, things will be much easier. I am a teacher and have been in many of these meetings. Once the writing happens, there are generally less bumps and bruises along the way. GL!
As for the not listening to your gut, I was there, thankfully for not as long but only because my oldest has the impulsivity and hyperactivity that made me seek help because it was affecting is self esteem. But I was put off by teachers (preschool) and family blaming inconsistent parenting, issues at home, him being so smart and being bored etc. I was made to feel horrible about his issues. The day I got his Dx was the biggest relief ever. It doesn't make the struggles go away but answers relieve some guilt and also gives you tools.
I can't talk to you about meds or IEPs. But I can tell you what it's like and the coping mechanisms I've created through the years on my own, as well as the ones my very talented coach taught me last year over a period of months. In other words, I can tell you he feels like with detail he cannot yet express, and I can give you some adult ways to help him develop skills he'll need.
I promise you that many people with ADD are like me. There is a high degree of ADD in corporate boardrooms all over the world. In art and music studios everywhere. There isn't anything he can't do or be great at, and ADD won't be a hurdle if he learns to work around it. He has a head start over me. That's good. He has you. That's even better.
I need to research what accommodations are out there. I know he needs longer time to complete tests but am at a lost for any other accommodations. There are so many websites that explain ADD but not many who offer a list of accommodations for school.
I know your system might be different over there, but my brother is ADHD, and "statemented" as having learning difficulties. He was statemented at 6yo, and the statement changed progressively, but ultimately he always was "on report" - he had a notebook which teachers and mum filled in, detailing his day, his set work etc. He was allowed to use a laptop in class, which improved his English scores no end, and was given extra time for testing, and allowed to listen to music on an ipod during testing, something which drastically improved his concentration and test scores. He also took all his GCSEs in a private room, rather than the large exam halls. It allowed him to listen to the radio, have a snack, and there was no distractions. As for his day to day schooling, he had a "peer mentor" and a trusted teacher that he could go to, at ANY time during the school day, if he was feeling anxious, or annoyed. This worked incredibly well, and she spent a lot of time helping him keep organised and on task during the day, helping him draw up study plans, and assisting him with homeworks and projects etc, even during lunch break. Keep your chin up, keep pushing the school to do everything possible, and think outside the box. It's amazing what ADD kids can achieve.
If I didn't have this blog to "vent" I would probably be an emotional wreck at meetings. Thanks for the reminder that this is team work.
You must look at what your state and local district have in place as far as accomodations. IEPs can be either detailed or relaxed. What is important is that you go into the meeting with an idea of what you want for your son. The school will be able to tell you best way to achieve your goals. If you are not satisfied with the results of the meeting, speak up. Do not let anyone push you around. Most schools will do all they can to help the children, but they are hampered by funding. Be willing to work with them, and listen to their ideas before shooting anything down. Firmness and understanding have taken me far with my daughter and her accomodations. Ohio has very good Special Ed laws, so feel confident that you have support.
In addition our school district has certified dyslexia specialists. They start testing at risk children in the beginning of 2nd grade. All 3 of my children (daughter/ twin boys) were tested at Scottish Rite as well as through the school district.
Does your school district have testing that you may request based on his reading/math scores. He sounds so much like my kiddos. I would be happy to send you any additional information. I'm not sure if you have access to my email address directly. I don't want to post it on here. I agree that you absolutely have to be your child's advocate or no one else will.
Feel free to ask any additional questions you have. I hope you can find a testing avenue that isn't 3500. OUCH!!
Marji
Our school does not have dyslexia specialists either.
My daughter also has ADD (inattentive). I've found CHADD (Children and Adults with ADHD) to be very helpful. They have a great website with support and tons of information. I think they also led me to ADDConnect - more support and information. You can also check the CHADD site to see if there is a CHADD group in your area. They are wonderful. Hang in there. Now that you know what you are dealing with, you can educate yourself and your son. It has made a world of difference for my daughter. She is now doing great in school. We still struggle with some issues now and then - especially organization - but she has become so much better at managing her work. We did decide to go the medication route with her. I know it is not a decision to take lightly, but I feel it was the right decision for us. She is on Focalin XR and is doing great. It has been like a miracle.
Not to say I know what you feel.
When our son was diagnosed with Asperger's, I already knew it.
Years ago.
Doesn't take the sting out...
So sorry, and I have an ear to always listen.
If I were you, I would:
-ask for the packet of parental rights in advance the 1st time, before the meeting, so you can read it and feel comfortable signing the paper for it.
-having J sit by a model peer, who doesn’t talk and distract him, and can sometimes remind him to stay on task
-a least-distracting environment in the classroom, possibly a front seat, near the teacher, where there is not a lot of visual and audio stimuli.
-test accommodations if he has low unit-test scores. I.e. if needed, pull-out for tests in quiet room with a special education teacher giving directions. Extra time-1/3 extra of the test time is allowed in MD. This means that if kids are allowed 30 minutes for the test, he can have an extra 10 minutes. This becomes important especially for standardized tests (state tests, SATs, etc.). It may not be as important for younger kids, but it’s worth asking about.
Hope this helps! Admin and teachers can be intimidating at meetings, but parents can be, too. Remind them during the meeting that you want everyone, parents and teachers, working TOGETHER to help J
I've printed out many comments and spent the day reading/researching and creating a binder full of resources.
I feel more prepared for the meeting tomorrow morning.
Thank you for holding my hand and offering advice.
-There is no need to make a decision to medicate today or tomorrow. Make adjustments in the classroom and at home and see what happens. We don't medicate but I know some who do. Don't let the school tell you. It's only your decision.
-It's incredibly important to me that the school sees my daughters talents. My girl is an artist, writer, seamstress and author. I always show them a sampling of her creative work. I want them to understand how her mind works. This has also led to them using her in the classroom to act out plays, design work, etc.
-You are a powerful mother for dealing with his struggles head-on. You are teaching him to use his strengths so that, as an adult, he will reach his potential. In my opinion, that is mothering at his finest.
We had the meeting this morning and I remembered to highlight my son's talents, to paint a better picture of what an awesome kiddo he is. I also mentioned what works for him at home. But I guess more of that will come out at the IEP meeting that we scheduled for next month. I will need to research all of the modifications that can help him. Thanks for your list.
- Our school uses the Barton Reading & Spelling System to tutor kids with dyslexia. There is a 45 minute video on the site called "Could it be Dyslexia?". I watched the entire thing and jotted down every single symptom that my daughter had. By the time the video was finished, I knew she was dyslexic. www.dysadd.com/freeVideos.html
-There may be other options for the dyslexia testing. Watch the video first to see if you think you need to pursue it further. Then, talk to other mothers. That's really the best way to gather any info you need.
- Amber's suggestions are fantastic and are many of the same accommodations we have for our girl.
- You will need to stay on top of the teacher and school. Understand that they have dynamic classrooms filled with kids with many needs and they are beyond stretched and busy but become their friend and it makes a big difference. There are some teachers that are more helpful than others but that's ok. Teachers don't always follow the IEP so you really have to stay on top of it.
- Each child is different and each child will achieve different things. You want Jay to be the best child that he can be. Standards are, just that, standards. I don't believe that they measure success in life. Jay needs to do well in school but he is on his own path to get there and that might be different than what others are doing.
When I was 9, I was diagnosed with ADD and dyslexia. My parents decided against medication as not much was known about ADD at the time and didn't want me to be a 'guniea pig" (obviously things have changed so if you decide to use medication now it will be a MUCH different scenario.)
My mother was amazing and sat with me every single night helping with homework, encouraging me, helping build confidence in my abilities and making sure I knew damn well that I wasn't "stupid." Also, she "nagged" the school constantly to make sure I was getting the help required - which I did get, but not without a fight.
Decades later, I have a Bachelors and Masters degree (both with honors), have studied and traveled through Europe doing research and now have a great job as an Archivist at an internationally renowned museum.
Sounds like you are doing a wonderful job so far with everything. Good luck and my heart is with you and Jay.
I do the same, as your mom did, at home but he's not getting the same at school. Which is why, I too, started to "nag" some and am finally getting somewhere. I hope that with modifications in his school day he can flourish.
Also. I want your life! Sounds so exciting.
Before you medicate, get input from teachers about his attention habits in class to see if he needs medication to help him focus or if accommodations are enough. Your doctor will probably give you a checklist to have his teachers complete before prescribing any medication.
But. But.... I wish I knew this last year. I wish I knew that I could put in a request. I feel like this year has been a total waste of time. I guess I should just focus on the fact that in 20 days an IEP will be written and he will be getting the accommodations that he needs. Right?
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