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4 Tips I Wish I'd Known About Parenting a Child With Special Needs

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Parenting is not easy. And (shh), it is not always fun. It can be grueling and, at times, seemingly impossible. There are days I want to put up a sign that says, “Gone Fishing. Or to Trader Joe’s. Or to pee. In Iceland.”

The thing is, parenting is isolating at times – no matter how much you love your children and adore motherhood. Having a kid with special needs can really throw you into a corner all alone. It doesn’t matter what the specific need is; it can be terrifying and trying along the way.

Here are four things I wish I had learned 12 years ago about parenting a child with special needs. 

1) It is not easy; maintain your sense of humor.

My oldest daughter and I have a special relationship. We get each other. We love each other so intensely it is often suffocating (for both of us).  She is fun, bright, passionate, funny and wants to be with me always. She also has attention-deficit/hyperactivity disorder (ADHD). We have all had to learn to laugh (with her) because otherwise we would cry. If we find humor in everything else, it makes the painful parts a little less painful.

2) Find support.

For years I did not share my daughter’s issues with anyone – not even her teachers. Sure, they knew she had ADHD and understood the impact it could have on her life at school. But no one knew about the difficulties she had at home: the meltdowns, difficulty reading social cues or how she would not go to sleep at night. I was sure all of this was because I was doing something wrong. Then one day, after a really rough night, I broke down to a friend. Lucky for me, I chose the right friend; as it turned out, her child had similar issues. We vented, shared stories and became each other’s main means of support during the hard times. To this day, we laugh together, cry together and offer each other tips.   

My other lifesaver has been our cognitive behavioral therapist. She has helped my daughter become aware of her behavior and work on regulating her emotions. She has assisted me and my husband in coming up with a behavior plan based on incentives. She has helped us understand the psychological and physiological characteristics of kids just like my daughter. It actually felt better to know our child is not entirely unique; it made us feel less alone.

Online support groups for parents are also helpful. There is a whole world of parents who are experiencing the same issues that you face. You can validate each other, mentor each other and explore your options together.

3) Tune out your critics. Trust yourself.

My harshest critics are often those closest to me. “She has tantrums because you are so strict with her.” “Why aren’t you enforcing more rules and limits?” “Why on earth are you not medicating her?” “Why did you medicate her? Poor kid!”

It was hard, but I had to learn to feel confident in my own parenting. As I relied more and more on “the experts” and my fellow parents to guide me through the rough patches, the more I was able to tune out my critics. I have learned to parent as I see fit. Oh, my critics still criticize, but I am more capable of ignoring them and carrying on. I have watched my daughter thrive and blossom as my husband and I learn to parent with confidence.

4) Advocate. Advocate. Advocate.

You are your child’s greatest advocate – and at times, maybe the only one. Even with the neuropsych evaluation in hand, you may have to gently (or not so gently) remind the teachers your child needs modifications and/or differentiation to meet goals and expectations.

When a teacher says, “Your daughter had a lot of trouble focusing on math today,” I ask, “What came before that block?” When they reply, “English and science and a double block of reading,” I know to ask, “Was there any gross motor movement? Any breaks? Was she given any time at all to get up out of her seat and even socialize?”

I’ve been on both sides of this coin. I’ve been the teacher with 28 kids in my class. I have seen how hard it can be to take every single child’s needs into account, but it is still so important for teachers to do this!

It is your right – perhaps even your job – to keep your finger on the pulse of your child’s life at school. If he/she is not successful, ask yourself: why not? A simple tweak, like walking around the school after half an hour of work, could be just the trick your child’s teachers may have overlooked. No one is a better expert on your child than you are. I should add that you will have many a teacher who has your child’s best interests at heart. We have had plenty of those! Be sure to let them know how much it means to you!

Every family has ups and downs. Every child has good days and bad days. Sometimes it feels like we families with children with special needs have more rough days than “normal” families do. But I assure you, this is not true. What I have learned since I started opening up is that no family is “normal.” And we are so lucky.

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An Experiment for People Who Don't Understand ADHD

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“All my life I had to fight,” in my Oprah voice of course.

My fight was not with a man or external factors, but with my own mind. It’s like I was constantly digging in a sand pit to find the real me. For those who have never experienced what I am explaining, it may seem a bit wild, but stay with me. Take your computer. Now open most of the tabs, run a couple of programs and, just for fun, turn on all the notifications. OK, now try to work in this manner for let’s say six hours (I don’t want to torture you too much.)

What happens? I will just give you a few possibilities. Your computer slows down, but hopefully it doesn’t crash. It takes forever for anything to open. Your patience grows thin. You grow annoyed and either stick with it or give up. Either way, now you are short-tempered and annoyed by not only just your computer but every and anything around you.  When you do get something to work, you are hyper-focused on that one task. You are so happy you can actually get something accomplished.

What you don’t notice is you have missed everything else. You pretty much work on whatever pops up on your computer as long as you can, until it goes away again. At the end of your six hours, you are frustrated, tired and unmotivated, knowing tomorrow you have to endure this again. You had so many hopes for the day but got nothing accomplished.

In this scenario, my brain is the computer and you are my body. This was my life with undiagnosed adult attention-deficit/hyperactivity disorder (ADHD). This example may seem like a bit of an exaggeration, but it is actually downplayed compared to the reality. I remember being so frustrated with knowing all I was capable of, but always being too tired to stay focused and accomplish what I wanted. Always being afraid of success because I was afraid I could not keep up and worried someone would see my flaws. Having to take all my energy to filter my thoughts into speech, only to be told you are speaking too fast or “I can’t understand you.”

In my mind, I am speaking too slow and will never be able to get it all out. Trying not to cut people off or finish their statements because I have already finished the whole conversation in mind with almost complete accuracy. Trying my very best to keep listening because something else has already won my attention.

To add to this, I am very analytical and I see life in patterns. I assume this a byproduct of me coping with my ADHD or maybe it is just me. So when I know everything someone is going to say or what they are going to do, it is because people are creatures of habit. So when someone asks me, “Are you psychic?” I want to say, “No, just a byproduct of 39 years of coping with ADHD.” Instead, I just answer, “Context clues.” This has been one of my ways of organizing my thoughts and my environment all to stay sane.

Now to get to the point of this: how and why I got diagnosed. It was not the unfiltered  thoughts but my recognition of my growing inability to control the increased impulsivity that led to a diagnosis. After many years of over controlling my emotions, I had become dull, feeling nothing. Eventually, I was starting to feel again, but it was all flooding in too quickly and was more than I could handle. I was getting to the point of losing control. I would say and do things without thought, as though my brain’s gatekeeper was on vacation.

After a day of trying to stay focused, my nights were the worst. There were nights I felt like my brain said screw it and that’s if I didn’t just crash. I tried meditation and it helped me think clearly about my life and all the things I didn’t put together before. Meditation helped me focus on getting help, which was the best decision I have ever made. I found a brilliant doctor, who also suffered from adult ADHD, and got medication, which I have never believed in. Today, I am a believer. For me, my medication is a blessing — and this is coming from a person who believes Manuka honey and Braggs apple cider vinegar can fix anything.

I am not sharing my story to promote any drugs because everyone’s struggle is different. I am sharing my story to help me heal and no longer be ashamed. I am sharing my story for anyone that is suffering as I did.

Please, always remember you are not alone. You are not broken. Your mind is complicated and you just need help organizing your brilliance. For those of you who have never experienced what I am speaking of, I have one request. Do not judge another person’s struggle until you have walked in their shoes.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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What It Feels Like to Be a Woman With ADHD

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Attention-deficit/hyperactivity disorder (ADHD) begins in childhood, which is when a lot of individuals are diagnosed. However, the number of adults being diagnosed with ADHD is growing — in particular women that seemed to slip through the cracks earlier in their lives due to an atypical presentation of the disease.

I am one of those women. I did not exhibit bad behavior in the classroom and generally I did well in school growing up. But what most people didn’t know is that I secretly struggled to stay afloat both academically and personally. I was so ashamed, so convinced my symptoms were some personal defects that needed changing, that I buried them deep and did what I could to cope with it. This is something that followed me into adulthood. By the time I was in my 20s, my life was a mess, much like the chaos inside my head. My methods of coping got me through the first part of my life, but it wasn’t working so well anymore.

It would take another 10 years before I would be diagnosed.

A lot of people wonder what ADHD feels like. After all, many think they have it, or claim to, even if in a joking manner, but those who actually struggle with it know how severe some of the symptoms can be. Before I was treated, ADHD affected every area of my life — personally, professionally and academically. It isn’t just a lack of concentration. It looks different in everyone. This is what it looks like in me.

It is hyperfocus — zooming in on a topic to the point that you lose yourself, lose time, lose relationships, because you are consumed by an idea, a project, a book, a television show.

It is me, feeling like everyone knows things I don’t because I miss out on parts of conversations, on lessons and lectures, on life because I’m constantly fighting to catch up. It is me overextending myself to try to be like everyone else.

It is feeling as though someone is pressing their hands against my ears, blocking out parts of what others say. I have to strain to grasp every word.

It is reading, only not really, because I start to skim and skip over parts due to an inability to pay attention to each word; that, and a burning impatience that wants me to reach the end immediately.

It is going to the movies, and then not knowing what your friends are talking about when they mention certain parts of it. It is feeling left out.

It is fighting an uphill battle to stay organized, to find your belongings, to keep track of them. It is getting locked out of your house because you forgot your keys. Again.

It is trying to listen, only feeling like the words bounce off of you instead of processing through your mind. It is thoughts, racing so fast you can’t capture them. You only see fragments, and sometimes they don’t make sense.

It is trying to write, to finish something, only to abandon everything halfway through because you’ve lost interest or focus. It is being unable to explain to others it was not your desire to do so, but rather your brain refusing to cooperate. It is feeling shame when they tell you try harder, to grow up, to accomplish something with your life.

It is wanting desperately to manage your disease, but being hindered by the same illness you are trying to treat because you are forgetful, scattered and disorganized.

It is seeing the world in pieces, and trying to do your best to assemble the puzzle.

For me, ADHD is complicated by my bipolar diagnosis. Even though the two illnesses have symptoms that overlap, the treatment for both diseases is different. I periodically have to cope with a lowered dose of my ADHD medication because it can trigger mania in some individuals. When a manic episode starts to manifest in my life, treating my ADHD sort of becomes secondary to controlling my mood — which of course has the potential to wreck my life if left unchecked. I understand this. I get it. It’s not fair and I want to kick and scream when it happens, because I hate feeling the way I do when my symptoms are out of control, but I comply because I know it is important. Bipolar is the monster that must be reckoned with. That is not to say my ADHD diagnosis is less important, only that in my life it is less damaging on a long-term basis if I temporarily take a lower dose of medication.

Bipolar disorder and ADHD have a lot in common — such as impulsivity — so in a way they can overlap and exacerbate one another in some individuals. For instance, I have to deal with some level of impulsivity all the time, though it is much worse in mania. I wish I could untangle the two diseases, separate them so that they are independent of one another and thus able to be treated accordingly, but unfortunately it doesn’t work that way. That’ll never happen. I have to rely on my inner strength to get through those times when ADHD treatment has to fall by the wayside until my bipolar disorder is under control.

Overall, things are better now that I have an ADHD diagnosis, even when my medication gets decreased. I’ve had more success with my ADHD medication than my bipolar meds thus far. Medication has done wonders for me. Learning some skills in therapy has also helped. It is still difficult, but these days my head is clearer, my thoughts less scattered and my life more manageable.

I didn’t get here overnight. It won’t all be better tomorrow. It’s a journey, one I am discovering each day. One I am not ashamed of, because I did not choose this life, but nothing is going to stop me from living it.

The Mighty is asking the following: For someone who doesn’t understand what it’s like to have your mental illness, describe what it’s like to be in your head for a day. Check out our Submit a Story page for more about our submission guidelines.

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When I Finally Told My Professor About My ADHD

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Dear Professor,

For the first two classes of the semester, I arrived to your class 30 minutes late because I forgot the class started at 6 p.m., not 6:30.

Every week I left something in your classroom, and when I went back to retrieve what I left behind you just smiled and said, “This seems to be a tradition for you.”

Then I completely forgot about a presentation I had to do, and when I asked you if I could switch presentation dates with someone else, you said nothing. You just grabbed your laptop and motioned for me to come outside with you. You informed me I was currently failing the class and showed me I how I’d lost track of the writing prompt for two writing assignments and gone off-topic, so you’d given me no credit for one and partial credit for the other.

But you said it in a way that wasn’t discouraging or belittling.

Despite this, you agreed to let me have an extension for my project. You had no idea I was dealing with attention-deficit/hyperactivity disorder (ADHD) and that this was an extremely embarrassing moment forme. You also didn’t see me fighting back tears with all my might as I began beating myself up for these things. My disability isn’t something I like anyone to see, especially my teachers. That embarrassment was enough to make sure I worked to my highest level. I earned 100 percent on every assignment after that.

When I stayed with you after class one night and admitted I have ADHD, you just smiled and said, “Don’t let it define you.”

I look back at that and laugh because you were right.

Not once did you see me as my disability. You saw a passionate student with a lot of potential (I know now no one else sees me as my weaknesses either, so why should I?)

Thank you for not judging me.

Thank you for showing me kindness when I wasn’t being kind to myself.

Thank you for reminding me once more that I own my weaknesses, not the other way around.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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The 'Unbreakable Kimmy Schmidt' Episode That Called Me a Parenting Failure

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mom and son taking a selfie I’ve felt like a failure many times during my life as a parent. My greatest sense of inadequacy came when I medicated my child for his attention deficit-hyperactivity disorder (ADHD). At the time, I felt like I was not being the mother my child needed nor providing him with the structure and discipline he needed. Luckily for me, my feelings of failure subsided as my son flourished.

They do return, however, when I encounter some of the stigmas associated with medicating a child. This feeling returned tenfold during a recent episode of Netflix’s “Unbreakable Kimmy Schmidt.”

During an episode in season two, Jacqueline (played by Jane Krakowski) took her son to the doctor because he was acting out and not listening to her. The doctor suggested Buckley was hyperactive and should be placed on “Dyziplen.” Throughout the episode, parents calm their children with this drug, putting them into a “zombie”-like state so they could be more easily controlled. For instance, once Buckley’s medication kicked in, Jacqueline decided he could be easily wrangled to the shoe store so she could shop without disruption.

To me, this is the outsider’s view of what I do when I medicate my child.

As the mother of a child with ADHD, I resent this caricature. 

For years my family struggled to help my son with various aspects of his disorder. We sought different types of therapies, used different discipline methods, changed our diets, created schedules and so on to avoid putting him on medication. In our eyes, medication meant we were failures. We were drawn into the stigma of the disorder and the treatment options often associated with it.

This stigma is enforced when shows like this suggest the challenges of ADHD can always be fixed with more family time and more discipline.

Five years after our many failed attempts, we decided to try something new. We took our son and our “failures” to the doctor in search of a treatment option we had once refused to try and left with a new perspective. Today, our son is doing well.

By the end of the episode, Buckley was also doing well. This was after his mother decided he did not need medication. Instead, Buckley needed more discipline and familial attention. For years, people told me my son needed just these two things to thrive, despite his diagnosis. I eventually learned this belief can be part of the stigma towards ADHD and treatment of it.

Every child is different, and our child needed a little more to thrive. Rather than adding to the stigma, I wish “Unbreakable Kimmy Schmidt” had presented these differences instead of painting the image that hyperactive children are reared by inattentive parents who do not provide structure or discipline. Then, and only then, could I have continued to watch this show without feeling like society was, once again, calling me a parenting failure.

Because that, I am not.

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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Explaining ADHD to Children With 'Frozen'

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If you have a young child with attention deficit-hyperactivity disorder, a great way to explain ADHD to them is to relate it to Elsa’s powers from “Frozen.” In case you’ve been living under a rock the past three years, Elsa is a queen who was born with ice powers. As a child, Elsa had a difficult time keeping her powers under control. (In case you haven’t caught on yet, the “powers” in our case are ADHD.) Elsa once hurt her younger sister by accidentally blasting her in the head with her powers, leaving her sister with a “scar” (a white streak in her hair). My daughter is impulsive and can say and do hurtful things to people she loves without even realizing she is hurting their feelings. And no, she is not a “brat,” and it is not because of bad parenting . ADHD is a neurological condition that, simply put, allows people to use their brains differently than most.

Elsa’s parents were scared for their daughter and didn’t know what else to do, so they did the only thing they felt they could: contain her power by giving Elsa gloves to wear. “Conceal. Don’t feel,” they advised Elsa. To me, the gloves in the story represent society. Society would love for all children to behave the same, wouldn’t they? At school, they want children to sit nicely and quietly in their seats, listen attentively to lessons and work diligently and seamlessly on their assignments. How nice it would be for teachers if every child in their classroom behaved like this, right? Well, I beg to differ. I’m not arguing that it wouldn’t make teachers’ lives easier, but I think it would definitely make them boring. If a rainbow were only one color (let’s say grey), it would not only be boring, it would be ugly. I may be a little biased here, but people with ADHD make the world more fun and more beautiful. Walt Disney, Adam Levine and Albert Einstein are just a few famous ADHDers who have made the world a better place.

During Elsa’s entire childhood, she isolated herself from everyone, including her younger sister. Elsa knew she was different, so she hid away in her room until she was old enough to become the queen and required to come out. At her coronation, Elsa wore gloves to conceal her power but was instructed to remove them for a part of the ceremony. Reluctantly, she did and then put them back on as quickly as she could.

A lot of times, young children with ADHD feel insecure and have a difficult time in social situations. What they think is hilarious may not be to their peers, which makes for some embarrassing moments at recess. As a result, children with ADHD may feel like they are awkward and that nobody wants to be their friend, so they shy away in fear of their peers rejecting them. It truly is heartbreaking to see my own daughter sitting on a bench at recess while the other kids from her class are playing a game of kickball together.

As a grown woman, Elsa decides to throw her gloves away and finally be free to be her true self. She uses her powers to build a gorgeous gigantic ice castle and a lovable walking talking snowman named Olaf. “I never knew what I was capable of,” Elsa confesses to her sister.

If we can teach our children with ADHD to not worry about what other people think of them and to simply embrace and love being themselves, they will accomplish so many amazing things in their lives. Not only does Elsa learn to embrace and love her powers, she learns to control it with the power of love. Now, this “love” could be a number of things when it comes to ADHD, behavioral therapy and medication being a couple. What our children with ADHD really need and want is the love, support, understanding and guidance of their family and friends.

Elsa
I’m not naive. Life is no fairytale, and I know ADHD can feel like a curse sometimes, but trust me, it’s not. ADHD is a gift. It truly is a power. Elsa’s parents were wrong when they gave her the gloves and told her to conceal her powers, but I can understand why they did. They were scared. When my daughter was initially diagnosed with ADHD, I was scared too. I am sure I have made mistakes with my daughter’s ADHD as well. I’m not perfect. Along the way though, I have learned and am still learning ways to help my daughter with her ADHD. She may not build an enormous ice castle, but there is no doubt in my mind she will accomplish things in her life of the same magnitude.

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. Check out our Submit a Story page for more about our submission guidelines.

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