>Raising Awareness: Living with Special Needs Day 5

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I’m closing the week out with a focus on ADHD/ODD/Mood Disorders. Most people have their own perspective on these things…they don’t exist; it’s not real; kids don’t have mood disorders…but these are very real, very difficult, and many times invisible. Sometimes finding support is difficult because no one else sees the problems your child has (like mine), or because there is no physical characteristic or trait, etc. None of us want to label our kids, but sometimes, just like medicating them, we don’t have a choice.

Kelly from The Miller Mix is a very proactive voice on ADHD. Her 9 year old son, Javi, has it. She has written many posts on ADHD, and you can find them all over the internet. She is one of the authors who writes for A Mom’s View of ADHD, a resource for some powerful information and support. She takes on the medication controversy here. She has a great philosophy on bullying. You can read about her family’s ordeal with ADHD here. Here is an interview with Kelly:

1. What was your initial reaction when you found out Javi has ADHD? 
I think I suspected it for a long time before I allowed myself to agree with the diagnosis. For startes, ADHD is genetic and I grew up with a parent who had unmanaged ADHD (which is obvious now but seemed normal then). Also, my nephew (Javier’s biological half-brother) and my younger half-brother both had already been diagnosed (separately, in different states, by different care providers). It seemed almost inevitable, but I put up a fight. My initial reaction was that we weren’t going to medicate. Seriously. That was my first thought. We spent the first two years after his diagnosis trying everything else under the sun to make him “better.” 

2. What’s the hardest part of life with his disability? How does it affect the family as a whole? 

ADHD is a neurological disorder, not a disability. Javier is neuro-atypical, but as long as we provide support and management that fits the way his brain is wired, he behaves and responds to stimuli like a neuro-typical child. His type of ADHD is inattentive (ADHD-i), so we struggle daily with forgetfulness and distractibility. He is also highly impulsive, so we spend most of our time trying to eliminate the distractions that will trip him up. For instance, we used to leave the adults’ toothpaste and the kids’ toothpaste in a drawer in the bathroom. Everyone’s toothbrushes were stored together. Big mistake! I can’t tell you how many times I found toothpaste all over the bathroom counter or smeared on the mirror for reasons he couldn’t explain (impulsitivity) or the toothpaste tube in the bathtub because … well, uh, I mean, see… (forgetfulnss and distractibility).  
Mainly, our family tries to avoid situations and environments that set Javi up for failure. We don’t take spontaneous trips or check out new places. Instead, an adult heavily researches everything and then we predict pitfalls and come up with workarounds. We figure out the best times and whether we should go as an entire family or split up (so the other child can enjoy said experience). It’s pretty exhausting.  

3. If your best friend just found out her child has ADHD, what 5 things would you tell her?
Actually, a good friend did just tell me her child has been diagnosed. I told her: 
— Try tinkering with his diet and vitamins first as many other disorders, including food allergies, mimic the symptoms of ADHD.
— Realize your child won’t fit in the ADHD box thanks to his/her own unique and bold personality. Every inattentive child and every hyperactive child and every impulsive child is different. Don’t try to sum them up with a list of symptoms or behaviors. Slapping a label on your child is a huge mistake. Don’t do it!
— Read, read, read! There are so many wonderful books, websites, and blogs dedicated to ADHD. My little podunk library has an entire section! My personal favorites are Love and Logic, Driven to Distraction, The Gift of ADHD, and Superparenting for ADHD.
— Invest in occupational and/or behavioral therapy. This has been crucial for us. We have many more skills and tools than we would had we not consulted the professionals. There are people trained specifically to help your child. Use them!
— Know this isn’t the end of the world for either you, your child, or your family. It seems overwhelming now, but you’ll hit your stride. Take a deep breath and hang on for the short term! 

4. Where have you seen the most improvement regarding his ADHD? 
Maturity and the correct medication have made a world of difference for us in the past few months. When on his medication, well rested, and in a structured environment, Javi has successfully resisted his impulses and been able to increase his academic comprehension. He placed in advanced classes for both reading and math, which was a huge shocker for us as he struggles with math concepts (you know, sitting and focusing and following multiple lines of instruction). 

5. As his mother, what is your worst fear for Javi? Is this different from Bella? How? 

This is going to sound slightly crazy, but I fear that my sweet kid will become a burden to society like his biological parents. Both of them collect financial assistance and don’t work despite being able-bodied, young people. They also both have long rap sheets from years of trouble with the law. One has ADHD and mood disorder and the other (we suspect) has a severe learning disability. I pray every night that we’re giving our sweet, super-smart little boy the tools, resources, and general foundation to be a functioning, successful member of society. I want him to be a happy, healthy adult more than anything. When he tells me he wants to be a rockstar art teacher who plays professional football, I respond, “whatever makes you happy.”  

This is definitely drastically different than my “goal” for Bella. She has no limitations or potential contraints on her genius. My baseline for measuring her success is higher than for measuring Javi’s because she has no mitigating factors. Of course, she’s also only 3. I may feel differently as she enters the school system and begins the too-fast hurtle toward adulthood.

Joining us today we also have a very courageous single mother of 2. Her oldest. The Girl, is 10 and she has ODD (Oppositional Defiance Disorder). She has been generous enough to share her journey with us. Please welcome That One Mom from Only Parent Chronicles:
We all have dreams for our children.  While in they’re utero, we dream of our healthy bundle of joy. Ten fingers, ten toes, and a nose I always used to say.
The very first time my daughter was placed in my arms, I knew she was an amazing gift.  She was pink and perfect with chubby little cheeks and and a pile of beautiful dark hair.  The first time she laid her stormy blue eyes on me, I knew my life would never be the same.
The Girl had a complicated infancy.  Her father, my husband, passed away when she was just six months old.  We had latching issues when breast feeding, I was often unable to calm or console her when she cried.  She was most at ease in her grandma’s arms.  I truly thought my infant daughter hated me.
As she grew, boundaries seemed difficult for her to grasp.  She regularly took things that weren’t hers.  She destroyed my possessions, ruined furniture and carpeting, lied and hid things in her room to “get rid of evidence”.  The Girl never accepted accountability for her actions.  Discipline was hard.  Time outs were futile and often ended with destructive retaliation.  She couldn’t be sent to her room unattended for fear of her destroying something in there.  There was nothing that was of enough significance to her that registered as a consequence when it was taken away.  At just 4 years old, The Girl’s behavior was beyond out of control.
Upon starting Kindegarten, teachers began identifying The Girl’s inability to assimilate to classroom structure.  Her social skills were “outside of the age group norm” and her behaviors were alienating her from her peers.  With the recommendation of her classroom teacher, a special needs assessment was conducted.
When an expert tells you there is something “wrong” with your child, your heart breaks into a million little pieces.  Looking at my daughter, one would never guess that she isn’t your average, every day girl.  She is over the moon for Justin Bieber, is particular about wearing clothes only from Justice, and has an obsession with shoes. However, living every day with her is a struggle.
No, my daughter doesn’t have any physical deformities, she doesn’t “look” different, or have a terminal illness. She is mobile, she is verbal (very verbal), and she has the basic ability to care for herself. She does however require daily medication to function at a “normal social level”.  She requires twice weekly in-home therapy to learn to process things that may seem like common sense to most. (No, stabbing knives through your brother’s door IS NOT an acceptable way of letting him know you’re upset. No, it IS NOT ok to take money/clothes/food/toys from your mom/friends/neighbors/the store just because you want it.)  She has a working IEP at her school that allows social skill training, sensory therapy, and instruction on seemingly simple things like staying in a classroom. She is also closely monitored on a monthy basis by a psychiatrist to ensure that her meds are right.
At the ripe old age of 10, my daughter has done two in-patient stays in behavioral health facilities.  I have been kicked in the face, punched, had MANY things thrown at me, had my hair pulled, been bitten, and spit on.  She has run off on multiple occasions, requiring the police to find her and bring her home.  
Knowing that the public only sees a bad kid breaks my heart.  She is not a bad kid.  She has a heart of gold.  She is a mother hen to small children, she has an immense capacity to love, she is nuturing to animals, and is an amazing artist.  Truly, I think it would be easier for people to understand her special needs if she did look different.  Having finally found a medication that fits her, I see The Girl making amazing strides.
Yes, she is still a compulsive liar.  Generally, if something in the house goes missing, it can be found hidden somewhere in her room.  She is still very impulsive,but her impulses are far less destructive than they used to be.  She is finally spending as much as 75% of her day in the classroom at school. And for the first time ever, this last weekend, she was invited to a slumber party.
ADHD and Oppositional Defiance Disorder are so not a walk in the park.  Unlike being told that your child can’t see well, or that your child is diabetic, or something to that nature, there is no guaranteed line of treatment.  In five years, The Girl has been through 33 different medications.  She has had 6 therapists, 4 psychiatrists, and 2 PCAs.  Finding people that fit your child is one of THE MOST IMPORTANT parts of treating these disorders.  Knowing what is “normal” for your kid is the best way to advocate for them.  If you are uncomfortable with something, SPEAK UP!  I’ve gone round after round and blow to blow with providers I didn’t agree with.  READ! Teach yourself about these diagnoses.  Remember, any behavioral health diagnosis is a series of symptoms that fit under a certain umbrella title outlined in the DSM. Get second opinions! Heck! Get third and fourth opinions if you want!  Remember – YOU ARE YOUR CHILD’S BIGGEST ADVOCATE!  If you don’t learn about their diagnosis and fight for what they need, no one will!
I want to thank all of the courageous ladies that allowed me to share their stories this week. I hope they touched your hearts like they have mine, and if you are a parent of a child like ours, I hope it comforted you to know you are not alone. No matter how bad a day can get, it’s only 24 hours. With the rising of the sun the next morning, a new day begins, and so does our hope. It won’t always be like this. I also hope that I have met my goal in raising awareness to how life can be when you have a child (or children) with special needs. All of our children are special, it’s just God created some of them extra special, and I am blessed to be the mother of one of these extra special kids. Jellybean definitely keeps my life interesting.

I am linking up some awesome posts I have found in the blogosphere related to ADHD, ODD, and mood disorders. I think the hardest part of having a child with a mood disorder for my family, is that she holds it all in and let’s loose at home. It’s almost like we are really living with this invisible thing, and no one else can believe that her diagnosis is real. If it weren’t for the brave moms out there willing to share their stories, I would feel alone. (If you have never read my Jellybean’s story, you can do that here.)

Please leave some love with The Miller Mix and Only Parent Chronicles. If you haven’t read them already, you can go back and check out Day 1, Day 2, Day 3, and Day 4. Thanks for hanging out this week!


5 thoughts on “>Raising Awareness: Living with Special Needs Day 5

  1. >Thank you for sharing.As the wife of an ADHD/OCD man and mother of what I suspect will be ADHD at a minimum I can say it is VERY real. And not at all the simple "everyday" thing people think it is.

  2. >I'm an adult who grew up with ADD-I. My 2nd daughter and 1st son both have the same thing. It's been a hard trek. Trying to keep my own life together while trying to keep my kid's lives on track has been a challenge I never anticipate! My neighbor's son has ODD/ADHD and I know some of the struggles they've dealt with. I've heard numerous times that ADD typically comes with other disorders. My daughter is borderline bi-polar. I'd say I have moments of depression, but not deep depression thankfully. Not sure yet if my son has anything.I say God gave my 2 non-ADD children a parent such as myself to test their faith. I'm here to help build their character. =)Thanks for sharing these stories!~Mimi

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