Friday, July 22, 2016

Special Needs Spotlight || Emme


Hi everyone! I’m Lacey. My husband and I have two kids Emme (5 almost 6) and Corbin (2) who lovingly came to us through adoption. I am a family and wedding photographer and you can often find me in the mountains with my camera in hand. My daughter Emme was diagnosed with ADHD when she was the tiny age of 2, and is also showing signs of Bipolar Disorder. We take things a day at a time and sometimes minute by minute. Thanks for spotlighting us today!​
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Miggy: Welcome Lacey and thank you so much for being here today and sharing your family's special needs journey with us. You have two beautiful children that came to your family through adoption. Your daughter Emme has severe ADHD and is also bi-polar. Can you take us back to when you first started to see some red flag and symptoms that something wasn't "right" with Emme? How long did it take you to get an official diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Lacey: One of the first sign’s we saw with Emme was mostly sensory related, but really it was once she started to walk that we noticed her hyperactivity was through the roof. On a scale of busy to uncontrollable, Emme was an atomic bomb. Nothing went unscathed when she was around including other kids and animals. I remember one of her first goals in early intervention was to hold still for 2 minutes. TWO MINUTES!! I have countless stories of running after her down our street, destroyed furniture, and dirty looks from other moms. It wasn’t hard to realize Emme had some extreme behavior issues. I could write a whole novel on this alone, but the important thing to note is Emme was not functioning. Not even a little bit.

Thankfully we came across Early Intervention and that lead us to a place called The Children’s Center. And by thankfully I mean I literally ugly cried to the receptionist while making our first appointment. TCC was a huge answer to our prayers. At The Children’s Center we were matched with a therapist and eventually a psychiatrist. Emme also attended their therapeutic preschool for almost two years. It was at TCC that she was diagnosed with ADHD. Although, I’ve crammed this all into one paragraph it was actually over the course of many, many months that this all went down. It seems fast now, but at the time dealing with a non-functioning child it felt like forever.

Bipolar is a fairly new discovery and one that we are still processing and keeping an eye on. Her psychiatrist brought up the possibility about a year ago after noticing that Emme was falling into the functioning and non-functioning patterns those with Bipolar Disorder tend to go through. To be honest I am just barely getting to the point where I can talk openly about it. I had accepted the ADHD. Some kids even grow out of that at some point, but not this. To me getting this news felt like someone had punched me in the gut and then tossed me into the deep dark ocean where only the ugliest of fish live. It was rough and still is. Because she is receiving the same kind of treatment right now whether she is diagnosed or not we are not rushing into confirming it quite yet. Although the likelihood and signs are there, together as parents and doctors we want to see if the patterns continue for a little while longer before we say we are 100% positive that this is what’s going on.  

Miggy: ADHD, like a lot of disorders, has a huge spectrum. I think many people (myself included) don't really know what ADHD is and sometimes even dismiss it as something that gets over diagnosed for kids who have a lot of energy. Additionally I didn't know someone could be diagnosed with bi-polar at the age of 5. Can you please educate us about ADHD and Bi-polar disorder and explain how your daughter’s needs affect your day-to-day life?

Lacey: ADHD is short for Attention Deficit Hyperactivity Disorder. There are three types; inattentive sometimes referred to as ADD, hyperactive-impulsive, and complex, which is both combined.  Emme has complex and is considered severe on the ADHD scale. Without medication her brain is so busy and full of noise that she is unable to handle simple daily tasks like getting ready or even riding in the car without major conflict. It’s actually really sad to watch because it is obvious she has absolutely no control over her body. The good news for Emme is we, as parents believe in using medication and because of that Emme is very high functioning during the day. Mornings and evenings can be hard, but they are good reminders that Emme needs the extra support of medication.  

The reason Bipolar has come up is due to the severe changes in Emme’s behavior about every 4-5 months and especially during the winter. She will be doing amazing and all of the sudden we will start to notice signs that a big change is coming. I don’t know how to effectively explain it other than saying it’s like Emme’s body has been taken over by a completely different person… a really energized violent person. The little girl who can often be found giggling and helping her little brother, switches to a girl who is attacking all of us and stabbing holes in my ottoman with a pen. She also becomes enraged about little things like asking her to wash her hands or pick up a toy. Her sleep is always disrupted during this time as well. It’s what her Dr. calls an energy surge. Our household turns into survival mode pretty quickly. The worst of it lasts about two to three weeks and it takes about two months to see our lovable Emme again. Without sharing too much for Emme’s sake just know that it’s a very dark time for all of us.

I am right there with you when you say you didn’t know something so big could be diagnosed at such a little age. In fact I asked her Dr. the very same thing. Although rare it does happen and when the signs are prominent enough, it’s hard to deny. Also, in Emme’s case she has been monitored very closely from a very small age. Never would Bipolar have been mentioned if we didn’t have almost four years of notes and professional observations to look back on. For that I am so thankful we sought out help when we did. Had we not, Emme would have none of the tools and skills she has worked so hard to acquire these last four years.  

Miggy: What are the biggest worries you face for your daughter Emme?

Lacey: I learned early on not to think about the future too much when it comes to Emme, but I definitely still worry about it often. Right now I would say my biggest fear is that one day she will make some bad decisions that have really big permanent consequences. I think we all worry about that to an extent, but where Emme tends to lean on the side of danger, it’s a big concern of mine.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Lacey: Humor plays a big part in our family. A story that comes to mind is when we were visiting the local Aquarium and Emme was talking non-stop to one of the workers who were feeding the Stingrays. She was asking all kinds of questions then suddenly stopped and said, “I take pills every day!” I chuckled kind of nervously and the cute worker told her she had pills she had to take every day too. My husband and I had a good laugh later that night.

Miggy: Having a child with an invisible disorder comes with its own unique challenges. How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations? I'm thinking that even friends and family have probably said things on occasion that have been hurtful, is there anything you would like your loved ones to know to avoid future hurt feelings?

Lacey: I think the best thing to do is just to not exclude her, but also realize there will be times we will have to decline play dates and certain events. Our immediate families love Emme so much and have been pretty understanding and patient with her. There have been many times that Emme has been aggressive towards her cousins and instead of their parents getting upset with her and us, they will usually take a moment to talk to their kids about why Emme is struggling that day. With that said, there have been a few instances of extended family members posting articles on Facebook about ADHD that are not quite accurate. I think it’s always easier to believe witty blog posts that claim they know best and have all the answers than it is to figure out what it’s like to have a disability like this in your every day life. It makes me really sad that people I love and have looked up to in the past would believe such an article enough to pass them around. They obviously haven’t witnessed a child struggle first hand on the level that Emme has.

Miggy: Tell us something you love about your daughter. A special story, a personality trait or just something others might not know.

Lacey: Emme surprises me quite often with what she is capable of. She has little fear and in some ways it makes life really fun. She loves public speaking and always gets really excited to speak in front of a crowd. On a whim one Fourth of July we entered her in a Mutton Busting contest and she did it without hesitation. Sure, she ate a pile of dirt, but that didn’t stop her from talking about riding a sheep for several months. She loves roller coasters and anything to do with boating. She can also be the sweetest little girl ever. Just the other day I got out of the shower to find her making my bed for me. Lastly, but not least, she gives the best hugs ever. They are super squeezy! These are the moments that my husband and I beam with joy that she is a part of our family.

Miggy: If you could say something to the mom who is just starting on this journey of special needs, what would you say?  What is the biggest lesson you’ve learned since becoming Emme's mom?

Lacey: I would say trust your gut. Pray for direction and do everything you can to advocate for your child’s needs. Don’t forget to forgive yourself. You’re probably doing better than you think you are. One of the biggest lessons I’ve learned in being Emme’s mom is that parenthood is full of really important things and not so important things. I try not to stress over the not so important things. Emme dresses herself every day and is most likely sporting a messy ponytail because she wanted to do her own hair again. Where others see a girl in a mismatched outfit and untamed hair, I see a future independent adult figuring out the world--one cheetah print shirt mixed with tribal leggings at a time.  
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Lacey that was fantastic--thank you for being so open about ADHD and Bi-polar and helping us understand a little better two diagnosis that are so often misunderstood. First, let me just say that I'm really glad you talked about the use of medication and how beneficial it has been for your daughter and your family. I did not understand what a different medication could make in a person's life until I took it for post partum depression. It was the difference between being unable to function at all and actually feeling happy and in control of my life. To quote a wise woman I once knew, "medication is a gift from God." I also loved your last line.  I often look at my straggly haired, messy faced children and see the vulnerability and purity that comes from being so completely themselves and doing the very best they can, and well that is something beautiful to behold. Thank you again so much Lacey and best of luck to you and your beautiful family.

YOU GUYS, please, please PLEASE help me find more amazing families and individuals to spotlight. I am always looking for participants so send them my way! Email me or have your friend/family member email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend!
XO,
Migs

8 comments:

  1. I could have written the same story about my adopted son. He was first diagnosed as ADHD. The head physchologist at Children's (Columbus) said he had ADHD with a capital HD. From that to bipolar.
    Fast forward to now........ He is going to be a Dad next week. Saying prayers for his little family.

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  2. Anonymous12:05 PM

    I totally understand what you mean when you talk about the articles people post about ADHD. I have had it my whole life (what would now be considered complex) and struggled so much, even now in my 30's. I see articles claiming it is a ploy led by big pharm companies and that kids who can't sit still are just being kids. It's so frustrating because ADHD is SO MUCH MORE than not being able to "sit still" or "pay attention". I worry that parents will read and believe those articles and not get the help for their children that they so desperately need. My 6 year old is displaying strong signs of ADHD...as soon as I convince my husband, I will be getting her evaluated. Especially since she starts 1st grade in a month. I want her to succeed and not have to struggle the way I struggled, without support or help or understanding.

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  3. Emme just shines in these pictures! I'm sure these kinds of images are good to hold on to when the dark time come I'm thankful this family was able to connect with a therapists, doctors, and a school that can meet their needs. I imagine that for these kinds of "invisible" disabilities it can be very hard for some families to get the treatment they need.

    I too take medicine everyday and think that modern medicine is divinely inspired. I think lots and lots of us do. Thanks God for medicine!

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  4. Hi, thanks for sharing Emme's story. My daughter has a similar pattern of dysfunction in winter. I will not be shocked if she gets a bipolar diagnosis some day, but her winter issues are anxiety. Anxiety is a disorder I don't see mentioned above. I am only just starting to realize just how much anxiety is an even bigger jssue for my daughter than SPD or ADHD.

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  5. Anonymous12:59 AM

    Thanks for sharing. I had a difficult day today as a single mom with my special needs son who is three.
    It can be so challenging! I am finally having him evaluated and getting the help we need. I say we because when you are dealing with these issues you realize as the parent you do indeed need help because it's so challenging and complex it's hard to know how to help sometimes. I feel helpless watching my son struggle and suffer so much lately. As a mom there is nothing more painful than not being able to relief your child's distress.

    So my house is a mess ( more than a mess- it's dirty!) I am seriously sleep deprived and was literally crying my eyes out when he finally fell asleep tonight. I think my son has sensory processing issues, he also has an eye disorder and he may have ADD and has compulsive repetitive behaviors as well, some of which are destructive. It's hard to explain!

    Anyway thanks for sharing. I feel hopeful after reading, knowing that with the right help things can and will improve. God bless you all and please pray for us!

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  6. Thanks for this! I always love your blog, but as an adoptive parent of an older child who struggles with intellectual disability and mental illness on top of his trauma history, these "invisible disability" posts really connect.

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  7. Anonymous9:50 AM

    Had to comment on this! One of my best friends is bi-polar. Shes medicated and fully functioning. It took a few years to get all the meds right...and when she takes them shes good...when she doesnt...look out! But shes got her masters degree and works as a therapist herself. She does struggle to maintain romantic relationships but is a divorced single mother of two and is an amazing mother and friend. Her life is abundantly more difficult than many others but she is diligent with her own health and is an inspiration to me.

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  8. Love spell came out tremendously, I highly recommending robinson.buckler @ yahoo .com for whatever problems you are experiencing in your relationship. He also healed my husband from Bipolar disorder. his love spell is absolutely wonderful .
    Elizabeth kings, USA

    ReplyDelete