Saturday, May 18, 2013

The Monster that stole my child.....ADHD

I definitely did not plan to write about something so personal, but tonight when I stopped in to visit my mother at work she asked me to talk to her co-worker about his son. As he relayed the frustrations that he has in regards to his son a flood of emotions came roaring back to me, and at that point I realized that people need to know they aren't the only ones fighting this battle, there are people who have been through it, and they want to support and encourage you. There are so many aspects to ADHD and each child is so very different. I cannot stress enough how important it is to find a pediatrician who supports you as the parent and your goals for your child, even if that means you have to "shop" around for the best fit. I want to share what we as a family have endured and learned living life with a very active short attention spanned boy who also has minimal long term memory.

We all remember the sweet baby we bring home from the hospital. The perfect toes, the little smiles, the laughs and your marveling in the bliss. With my sweet boy as he got older the perfection was slowly worn away until one day I no longer knew what had happened it was like someone stole my child and left this wild uncontrollable monster in place. I wanted the perfect little boy back, I had done everything right and felt I deserved a perfect child without any disabilities or imperfections. So when my sweet little boy was first diagnosed with ADHD and put on medication I was blissfully ignorant what that meant; but the medication brought back most of my sweet little boy or at least enough of him that I no longer felt like this child was not mine. The doctor explained to me that the medication would help some of the uncontrollable undesirable behavior, at the time he was 4 years old and in pre-k as an early intervention since there was already something noticeably different about his learning. As the months wore on the ups and the downs were devastating and the behavior didn't stop or even slow down. Dozens of medications, doctor visits, parent conferences, and nasty notes later a "best" medication was settled on and we continued to go about life blissfully unaware. Eventually we were forced to switch doctors due to in-network reasons and the new one was mortified as he hadn't ever seen a case with ADHD as severe as I was dealing with; we were way over the recommended limit for medication based on weight, had a heart condition, and were in a constant up and down cycle. By this time I no longer craved my perfect baby back but had accepted I had a wild child that needed heavily medicated just so he could sit still long enough in school to absorb something. Pretty quickly the doctor told me that we were going to work on a few things to help lessen the hyperactivity without increasing the medication. This is the first time I even thought about medication not being the only treatment, and our journey began.

We tracked the ingredients in everything we ate in order to pinpoint the worst offenders that caused the hyperactivity. This is a long drawn out process and pinpointing the culprits can be tricky, but look for repeat ingredients on the worst days and begin there because good chance these are your problem foods. It is key to have your medical provider's support throughout the process and know that this takes time. For us the worst culprits early on were red food dyes and refined sugar; cutting these out you would think would be easy but it is far from easy. What I learned is that these items are highly addictive and my sweet boy was addicted to them and would go to great lengths to get them. He was not deterred by what was socially acceptable and would eat food off the floor or out of garbage cans in order to get his sugar high. This is what I like to call sugar detox.....it's awful and there is no nice way of saying it. IT STINKS! It is a dark time and you feel like the worst parent on the earth; and people will look at you like you are but you are not the worst you are the best because you truly care about your child enough to make a huge sacrifice for them. You will be emotionally and physically exhausted but the light at the end of the tunnel will come you just have to stick it out.

Eventually we were forced to change doctors again, and by this time I was much better about doing my homework. When your child is 10 years old, 48 pounds and has a list of medical and learning issues it's best to get a doctor who is going to be understanding yet still firm and willing to listen to you as a parent. So I went down the list of medical providers and didn't have to go far because one of the first ones on the list specialized in ADHD, learning disabilities, and nutrition.....everything that I needed wrapped up into a single doctor!

Almost immediately she encouraged a wider spread of items that I limit in the diet including almost all preservatives, sugar alcohols and sugar substitutes, caffeine in all forms, as well as limit the white flour products. So we were off to making more limitations and eating out less. This lead to days upon days of blah food because even spice mixes if you don't watch closely have those pesky preservatives in them.

I have a few confessions: I love sugar! I hate not being able to go out to eat like "normal" people do and I would prefer my child is not running crazy down the street screaming.

So now onto my words of encouragement and advice. My disclaimer here is I am far from an expert on nutrition, please find a medical provider for your child that is a good fit as any changes in diet while on ADHD medication needs to be strictly overseen by a medical professional.

First everyday is an adventure and people will stare and judge you as a parent. You can't change their behavior, you have to move forward.

Don't let people's stares or ignorance stop you, hyperactive children need to get out, experience life, and be active. We love to go to the park and bike ride, but we also have a deep love of the arts and frequent museums. I encourage you to go and take even the worst of hyperactive kids, but find a way that they can be engaged and not completely disruptive to other patrons. We love to go to the Nasher Sculpture Center and always get the guided tour speaker tour if its available; this helps focus my sweet boy where he would otherwise be running wild. We love to go to opening weekend for the exhibits, but this isn't a great idea where there will be throngs of people all wanting to view the exhibit in a serene environment...this doesn't involve running screaming kids. Save yourself the headache and stress and don't go when there will be tons of people there if you can help it. If you do go to an exhibit where there are tons of people don't leave do your best to engage and discuss each piece with your hyperactive child and get them to look for their favorite pieces....it's best here to look up a few pieces on the web before going and let your hyperactive child choose their favorite and then take the image with so they can talk about if they still like their "favorite"  or have a new favorite.

If you are a schedule maker, get past it schedules are out the window! Schedules and routines are not the same. We have a routine where each day is very much like the previous day, but I like to schedule out the weekends all the way down to the time my laundry will be complete. When on road trips I will plan the estimated time we will be at major landmarks...this is good when you want to avoid crossing the Mississippi River during rush hour but the rest of the time you have to let it go. I still like to schedule only 10 minutes at gas stations and don't like to stop for unscheduled bathroom breaks, but I have to crush the schedule at times and just go with it. This could be the hardest part for me!

ADHD children are not bad, they just need to learn some techniques to help control their impulses. Yes you may have to endure screaming in the car during gridlock or the noise level in your house may cause you to wear shooter's muffs; take it from this Mama get the ones with volume control you will thank me later. It breaks my heart when I hear people hospitalizing....well sending them to a residential treatment facility...children because they have ADHD.  Some children need this and it's quite beneficial for them, but if your sending them away because you don't want to deal with it that is just wrong in my very honest opinion.

Diet is your best friend and your worst enemy. Whether we like it or not what we give our ADHD children will affect them in ways we have no clue until we find them standing on the roof of the house. Standing on the roof of the house sure seems like a fun thing to do, and the impulse wins out every single time....until they learn to control it. When you find a diet that works, get everywhere your child will be eating on board because just one person not on board will send you right back to sugar detox. Even years into the diet my sweet boy does things that he shouldn't. You know I have an example for you here. Yesterday while I was not looking it sure seemed like a bowl of sugar with a strawberry (yes just 1) and whipped cream sure would be a great snack to my sweet boy. Yes I still have sugar in my home, I admit I love my sweet tea! So it was a long evening of hyperactivity and what goes up must come down; and down he came crashing into full blown sugar detox mode. There was screaming, kicking, crying, bad attitude and a horrific headache all before getting out of bed; you have to be strong here and get  them out of bed and moving around.

Find or create your support group. I went through a good portion of the sugar detox with only the support of the doctor. My family thought I was being too radical, they have since gotten on board when they saw for themselves the affect of sugar. Sugar detox is terrible and when you have no one to turn to when you are exhausted and just want to give up, yes there will be those times.....a lot of those times, the world will be a very lonely empty place.

Finally realize magazine cover perfect isn't perfect or even reality! Embrace all the things that make your sweet child them including the ADHD. I know this is a lot of words and I am going to give you a perfect example. Back in 2010 after several tries and Frankenstein smile pictures I decided I would take pictures of my children myself, this is a big undertaking with an ADHD child when there are so many stimuli and distractions in public. I was determined to get a great image and after several hours and attempts I had hundreds of images most of which looked like this one. Crazy hair, missing teeth, and running at least he was running toward me and not toward the duck pond that I took this image by. 
Fast forward three years and I have learned that nearby duck ponds and roads are not the best place to take pictures as you never quite know what is going to happen. I had my sweet boy standing by a rock wall and figured I would snap a quick pic before he could move because I sure would love a picture with his amazing blue eyes gleaming. So I ran to where I needed to be and turned and quickly snapped only to get something not very different from before....running once again. I was not pleased but that was it the chance was blown for the day. I had hoped that I would get a great spring picture to replace the one that has been in my hallway for the last 3 years, and at first thought this was a fail. But after awhile I realized this isn't a fail but a huge success he is smiling and enjoying the sun on his face. I may not have gotten the magazine cover sparkly eye photo I wanted but I captured pure spur of the moment joy.

I hope that a bit of history of our personal journey has helped you realize that ADHD isn't the end of the road but the start of a new beginning.

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