First off, I want to thank you all for your questions. My son’s story got a lot of attention when I came out with it and decided to put him on a gluten-free diet. You can read Part one and Part two (which includes a recipe for Gluten Free Bread) if you want to get up to speed. I’ve been meaning to update everyone but each time I tried to, we went through more changes. It’s been almost 2 years since my last post on this subject. I think it’s time for an update! I’ll be writing this in a Q & A form because of the questions I’ve received, it felt best to answer them one by one.
Q “Did the gluten-free diet help your son?”
A. It did help somewhat but for us, just not enough to take him off and keep him off his meds. At the time I wrote that article he was 14 and we had tried one month of no medication and with as gluten-free as we could go with him. It helped a little but not as much as we were hoping for. We couldn’t keep him on just a gluten-free diet for any longer as school was in session and taking no medication was really effecting his grades and behavior in school. Perhaps the benefits would have been greater the longer we stuck to it..I dunno? We just knew that time was of the essence and we had to do something fast to keep him from falling too far behind in his school work. I’m not sure if it’s just the way he’s wired and maybe the results would be awesome for another child. I really have no way of comparing nor would I try. I also didn’t know enough about a gluten-free diet when he was younger so trying it on a younger child may help them. All I can suggest is to try it. Whether it works or not, at least you’ll know.
I found it was a huge commitment and added expense. Many meals I was left scratching my head because he’s such a picky eater..other times I just gave him more gluten-free pasta. This had me making two meals most nights. THAT was a pain! At least I thought so since we were not reaping any huge benefits from it. Otherwise, I would have kept him on it. To be honest, if you have a tight schedule, this may not be the way to go for you. It takes a great deal of time and planning, not to mention the execution. It’s not as easy as people would have you believe. At least rice and potatoes are gluten-free, thankfully!
Q “What can you suggest doing when a child with ADHD/ADD has a bad temper?”
A The temper thing is SO exasperating isn’t it? Sometimes there’s a percolating build-up and other times it’s explosive! At least that’s how it was for my son. I would highly recommend Melatonin to help your child sleep at night. ADHD kids have a terrible time settling their brains down at night and any lost sleep can REALLY make them more cranky and irritable during the day. One less hour of sleep could throw an entire day out the window. Have and keep a strict schedule and bedtime. Honestly, looking back I would say for my son, the extra sleep helped him more than a gluten-free diet! Melatonin was indeed a God send!
Another nugget that helped us was to allow a type of time out. Not to punish but a time when they can take themselves out of a heated situation to calm down. Never, and I mean NEVER try to reason with your child when they’re seeing red. It doesn’t work and just makes both of you more frustrated. Give them a safe place to go cool down. Re-addressing the topic when they’re calm will be easier on both of you. It will also sink in better since they’re frustration isn’t on overload.
Allow them to explain where they’re coming from, what they’re thinking and how they’re feeling. Not giving them a way to express themselves will only cause them to become more withdrawn. That is something you do not want! They already see they are different from other kids. Other kids will let them know it too. Struggling with their peers and school work are forms of contention and triggers that can set them off. Work with the school to allow them to quietly leave the classroom or go to the principle’s office. Even if it’s for 5 minutes, sometimes all they need is an escape route and they need to be able to put feelings into words. Many times both happen on their terms. They need to feel in control of something and that’s okay as long as they’re respectful.
Now that he’s in high school he doesn’t need an escape route any longer. It did get him through some tough days though.
Q “How did you get him through school?”
A Other parents and even teachers who haven’t lived this, really do not understand what parents and children go through. My son was also bullied and teased a great deal from 5th through 7th grade. The things other children would say and do to my son was horrendous! It was as if they could tell when his meds were off and couldn’t wait to push his buttons. He plopped into the front seat of my van many days in a sobbing heap of tears begging me to never send him back to school. It was heartbreaking and happened on a weekly and sometimes daily basis. All I could do was console him and keep an open line of communication with his teachers and the principle.
Our school’s bullying agenda was a HUGE issue for us during this same time frame. All I will say is, the kid that started it NEVER got into trouble…but my son (the type to never start anything but could finish it) always did. Be prepared for this. I finally told his principle that if he focused more time on the kids starting the trouble, and utilized a swift and severe punishment on them – and less time on kids trying to defend themselves, his job would get a lot easier! Many situations are not black and white, not all players are found out, and not all schools share the same policies. I get that. However, there are occasions when the situation is pretty clear cut and should be handled accordingly. Be up to speed as to what expectations and rules your school has.
I had one teacher corner me at church…are you sitting down?… to tell me she believed my son was schizophrenic. Yeah, I know. Shocking right? All he needed was a med change and she’s diagnosing him with a mental illness! That was one time I almost lost it. I’m glad I didn’t but I came really close. A year later when she saw him doing worlds better, she approached me. She was somewhat at a loss for words and I could tell she felt sorry for having ever suggested such a thing.
Don’t lose your cool, EVER! Always stay in control when dealing with teachers and the principle. NEVER lose your temper, use vulgarity or raise your voice. Stay calm and be respectful. The very second you lose your cool, you’ve lost any credibility to be an advocate for your child. Stomping into a principle’s office like a bull in a china closet, making demands and cussing out everyone in the office will not get you as far as you think it will. If anything, it will cause the school to barely put up with you, (if not kick you out) not partner with you. My belief was I need them to work WITH me, not against me and I couldn’t allow anything to put an unnecessary strain on those relationships. They were with him all day. They were my lifeline to his daily life. They were the professionals. I had to partner with them to set him up for success. Period.
They need something that belongs to them and brings them joy. My son’s only outlet was basketball. He had something that was HIS. It helped him take out his frustration, built up energy and learn some great life lessons. Basketball was a miracle for him…a type of therapy if you will. He would (and still does) eat and sleep basketball and may never have gotten through the hard days without it. When he was in the eighth grade, one of his teachers told me, “If you were as involved with his academics as you are with his basketball, he’d get better grades!” I remained quiet because I knew she had no idea what she just said. Yes, she had the nerve to make me sound like some sort of “stage mom”…meanwhile I was desperately trying to get my son through each day without his spirit being broken. I could care less if he got a C in math. If he was happy, that’s all I needed to know and I couldn’t care less what anyone thought. Be sure your child has an activity like sports, theater, play a musical instrument or something that they can embrace and call their own.
Q “Did your son take meds and if so which ones helped the most?”
A My son had the best results when he took Concerta. Out of all the meds we tried, (and believe me we tried many) that was the only one that didn’t make him lethargic, or diminish his appetite. Every time he got extra cranky or was quick to anger, we knew he was growing or going through a “growth spurt” and would make an appointment with his doctor. After a few times of going through this, we could tell right away when he was growing. It happened a LOT! We got so good at detecting it, all I had to do is tell his doctor, “He’s growing again, time for another change!”
Q “How is your son doing now?”
A My son is now almost sixteen, six-foot two and is no longer taking any form of medication. He’s been med free for a year and a half and doing very good! I believe he simply grew out of some of his ADHD symptoms. Now that he’s older, he has a more mature thought process making it easier to reason with him and for him to function with success. He still gets ticked off once in a while and still struggles a little bit with staying organized – but even I do that! He’s happy, able to think through a problem and has a lot more self-control and a lot more self-esteem. I believe for him, taking the meds when he was younger helped for three reasons:
1) He could get through a day and feel successful
2) He was calm and focused enough to learn what he otherwise would have been too distracted to learn.
3) He could work on his social skills without being off-putting to others.
I will also add that changing meds during a school year can be a recipe for disaster! Please trust me on this. If they don’t react well to it, you’re setting them up for problems. Problems with the teacher, inability to do homework, problems with other students..etc. The Summer is THE best time to try to pin point the best meds and the best dosage in my opinion. If a medication works, then stick with what works. I can understand not wanting to give your child meds on the weekends but I suggest doing so for them to retain a sense of normalcy and for your sanity.
Warning signs. While taking medication, if your child suddenly has a temper you haven’t seen before or mentions wanting to hurt themselves, (or ANY warnings that a medication may have) then they’re meds or the dosage needs to change. I’m no doctor but it doesn’t take a rocket scientist to know when something is terribly wrong. Tell your doctor right away or call 911!
The secret age of big changes. The age to really start watching for any significant changes is around eleven. Their bodies are not only growing but are beginning to produce hormones. Their bodies are starting to change…in other words, a LOT is going on! It’s understandable if you notice your child acting very differently around this age under the best of circumstances. Throw ADHD/ADD in the mix and it can be a hot mess! If you have to change medication or the dosage during the school year, have an understanding with your doctor that you may need to have fast access to an appointment in order to do this as quickly as possible. There’s nothing worse than a doctor who is always so packed with appointments, your child has to wait months to be seen. They suffer needlessly for what seems like ages to them, you and their teacher. I can attest to this first hand. It isn’t pretty.
Growth spurts. During growth spurts their meds can go haywire. See the Doctor, often if necessary. Tweak and change when you see the signs of your child not behaving like their usual self. Keeping them on the same dose or same medication and wondering why they’re getting angrier and angrier is like setting your house on fire and wondering why it’s burning. Pay attention to the changes. If you have to write it down to keep track, then by all means, go ahead. Pretty soon, you’ll be able to tell right away when anything seems off.
Work closely with your child’s doctor. By the last two years my son was on meds, our doctor would just ask a couple of questions, I would tell him what I think should change and that’s what we’d do. We were literally THAT in tune to our son. Our doctor really put a lot of trust in us. I am thankful for that. We even came up with the idea to give him a higher dose one day and a lower dose the next and he did awesome with that formula for an entire year. It absolutely takes thinking outside the box and a doctor willing to take cues from you. After all, you know your child better than anyone!
Medication. I know I sound like a huge proponent of medication…and I don’t mean to be because dealing with it was challenging, hair pulling and expensive! I know for my son, trying so many natural things was also frustrating because nothing from that arena made a huge difference and I think that’s what we are looking for – a one stop fix. I just don’t believe there is ONE thing to fix, heal or alleviate all ADHD/ADD symptoms in every child. It takes trying everything to find the one thing (or several things in tandem) that makes life happier and easier for them. Medication helped my son the most of everything we tried. Remember, each child is different and their body chemistry is different. It does however, take parents who are in it for the long hall, who won’t give up and who will always be an advocate for their child.
My son is my heart. We are very close. We are far removed from the days when he’d punch me in the stomach and said he hated me. For all he’s been through, he always knew my husband and I were doing all we could for his well-being. He knows I took on hell itself on his behalf, time after time and sometimes – several times in one day! He knows how much I value him and how amazing I know he is. It didn’t happen overnight. It took years of daily struggles, countless restless nights, the patience of Job, focusing on the good instead of the bad, a commitment like no other, immeasurable understanding and a lot of prayer.
Take heart moms. It does get better, it did for us. There is light at the end of the tunnel. Do not quit – your child is worth it!
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