Thoughts on A Second Diagnosis

I discussed our issues with Lily in Adjusting to A New World and Special Needs Round Two.

The results are back and I wasn’t far off in my thoughts- she has ADHD, the inattentive type. I was so concerned about an autism diagnosis that I barely looked at information on ADHD in girls. The diagnosis itself isn’t a shock, but my thoughts on it are a lot different than I expected.

I usually don’t use my blog to get so personal but in this case, I figured people wanted updates.

Ann, the same psychiatric nurse practitioner that sees Julian, did the evaluation. She told me that it isn’t uncommon for siblings to have ADHD, autism and other neurological disorders.

This makes sense- I met quite a few sets of siblings at the mental health facility I worked at. I also know a couple of sets of siblings in which ADHD or autism is involved. For example, Josh has four kids, two of which are on the spectrum. I do not know how he and his wife, Emily, function on a daily basis. Another friend, Lauren, has two sons with ADHD and one of them is also on the spectrum.

Girls with ADHD

So here I am, with not one, but two kids with ADHD. I will be honest here- I would have cried had she been on the spectrum. Handling Julian has not been easy. There have been massive meltdowns and shutdowns and times I just couldn’t reach him no matter what I tried.

It is good that I have some direction now- there is so much we can do to make her life a bit easier. We have made a lot of adjustments for Julian over the years so it’s not a second thought to do the same for Lily. Benny, her therapist, has returned from a 3-month position in Germany so that should be a good place to start.

Lily isn’t a fan of meds when she’s sick, so we are holding off for now. This kid makes all As and Bs even with attention issues. She’s not aggressive or having other issues that require meds immediately so she may not end up on them at all.

I told her to talk to Julian if she wants an idea of what it is like to take meds for ADHD because I am entirely clueless about how those medications make you feel. He has been medicated since shortly after his diagnosis. They have helped greatly and I do not regret that decision. As my mom once said, “We got Julian back.” Meds don’t fix everything, but they certainly help.

I’m feeling a bit overwhelmed. I’m used to that feeling. I wonder if I can really handle this- I have that thought on an almost daily basis. I know I have support, but that thought creeps up a lot more than I would like.

I am, however, glad that I was able to get Lily this evaluation and the therapy she needs. I know not every kid is this fortunate. I have some reading to do and some changes to make. Wish us luck, because we will need it.

Pic courtesy of Pinterest

The Truth About Shutdowns and Meltdowns

There are many parts of parenting that we would rather not have happen- stomach bugs, dentist appointments, braces.. the list can go on for a while.

If you’re a parent of a child (or children) with ASD and/or ADHD, a couple of things on that list probably includes shutdowns and/or meltdowns. Neither are fun and we would do just about anything to wipe them off the map. I know I would. Julian’s had both and there’s nothing fun about them.

Let’s take a look..

A shutdown is when the following things occur with your child:

  • may not move, blink or speak
  • may appear as avoidant, escaping or ignoring to others that may not understand what is going on
  • may find a dark, quiet space to get away
  • curl into a ball or fetal position

Why do these occur?

  • Extreme stress
  • Sensory overload (noise, visual are usually the biggest trigger)
  • Frustration

A meltdown is when the following things occur with your child:

  • potentially dangerous and/or aggressive behavior (kicking, biting, screaming, yelling, throwing, etc. Julian almost broke my nose during one when he was smaller) Self- injury is also possible.
  • Bolting
  • Destroying property

These can be stopped, or at least lessened, if you learn your child’s triggers. For example, Julian hates Bath and Body Works because of the many different scents. I avoid taking him in there if I can. If I absolutely have to take him, I am in and out within minutes. We went to the outlet in Daytona Beach, and we were out as soon as he said, “Mom, we need to go, right now.” That’s his code phrase for “I’m done and we need to go.” I already knew what I wanted. This comes from years of knowing my son, plus he had a massive meltdown when he was younger in the middle of our local store.

It may take a few incidents and some tears but learning your child’s triggers is the best thing you can do for everyone. My personal motto for this is “Know your kid”. Your child’s triggers may change as they grow, but some may stay the same.

The reasons for meltdowns are pretty similar to shutdowns. It depends on the kid and situation. Julian is more likely to have a shutdown than a meltdown these days, but I wish he didn’t have either one. He still has bursts of anger, but he’s 12 and there’s a thing called testosterone. Public meltdowns are the worst, and any parent that’s had to deal with that knows that awful feeling. Everyone in the area is staring at you and your child, you just want to go, and all you really want is your child to calm down.

From a parenting perspective, watching your child go through either is heartbreaking. I spent many days crying because I couldn’t stand to watch Julian throwing things, screaming and scaring his siblings. I was relieved when he finally stopped having meltdowns. It hurts my heart when he has shutdowns because I can’t reach him. I have to wait for him to speak- he’s a quiet kid and expressing feelings isn’t easy. I try to put myself inside his brain and remember he lives in a different world than the rest of us.

What Can You Do?

If your child is having a meltdown:

  • Assess the situation. Is everyone safe? Is there anything you need to move to make the area safer? If so, move toys and other objects out of the way.
  • Move other people out of the room that don’t need to be there. This is the most important thing. If your child self-injures, make sure they can’t hurt themselves. If your child is becoming truly dangerous to themselves or others, please take them to the closest emergency room or call 911.
  • Don’t try to reason with a child that is verbal if they are screaming or yelling at you- they are well past that point. If you want to try to talk to them, you may want to wait until they are calm.
  • Remain calm. This is very important. Things can get a lot worse if you become agitated. Your child needs you to remain calm.
  • Limit communication. Your child has enough going on in their mind.
  • Give your child time to recover. Meltdowns are exhausting. They can talk later.

If your child has shut down:

  • Give them the space and quiet they need, as long as they are safe. They may or may not respond to anyone or anything until they are ready, and this may take some time.
  • Don’t rush them, this may make the situation worse.
  • Give them any sensory supports they may need.
  • If they want to talk afterwards, let them talk.

These can be difficult moments, no matter when or where they occur. It’s our job as parents to understand and try our best to guide and love our kids through whatever they bring us.

Pics courtesy of Unsplash

Information courtesy of

My Asperger’s Child

Bristol Autism Support

Psychology Today

The Autism Analyst

Twin Mummy and Daddy

Adjusting to a New World

Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.

But what happens when those things are altered because of a special needs diagnosis?

Cry a little

The Big Change

Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.

The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.

In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?

He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.

I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.

Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.

This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.

I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.

Never give up

It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.

Making The Best of Things

Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.

Small steps

It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)

If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.

He dropped the jar.

Major mom fail.

Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.

Super parent

Final Thoughts and Tips:

If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.

It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.

Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.

Breathe and find something that makes you laugh. Comedy will get you through anything.

Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.

You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.

If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn

Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.

Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.

Quotes courtesy of Pinterest

Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius

Twin Mummy and Daddy

Raising Boys and Girls: The Differences

My boys were born in 2005 and 2006. I thought I’d never have a daughter and felt a small amount of sadness.

A small change occurred in 2008 in the form of a little girl, Lily. She even got her own post, My Dream Girl

I didn’t think there were many differences between raising boys and girls- at first. I must have been in a sleepy haze or serious denial. Now that I’ve caught up on a few years of sleep, I’m much wiser.

Ladies First…

Zoo pic

Lily at the Louisville Zoo, Summer 2018

I was once a little girl. I couldn’t have been that difficult to raise, right? I asked my mom if I was as dramatic, loud and messy af as Lily is. We call her room “the kid version of “Hoarders” because it’s never clean for more than a day. My mother told me yes, I was loud (I’m still loud at 35, no shocker), dramatic, but not quite at her level of messy.

THANKS, MOM.

Puberty has come for us and the current situation is buying bras. I had to get her a real bra recently, not just the cute sports bras. Yikes. She’s 10. Is this a thing? I skipped training bras and went straight to regular ones.

We’re a bit gentler on Lily. She’s more sensitive than her brothers and still may be developmentally delayed. (She is getting evaluated very soon.) That requires a different mindset. I have to teach her different things- to know her worth as the woman she will become, how to say “no” and not feel bad, caring for others (as in a family, should she have one) and many other things. The boys will get the same lessons but obviously slightly tweaked.

Lily loves clothes and has shown interest in makeup which is a great thing. I can’t wait to see this develop. This is just a glimpse into the fun parts of raising a daughter.

The Boy Brigade

Arch pic

Cameron and Julian in the cart at the Arch

These guys have been full of adventure since birth. They have really lived up to the hype of “boys get into everything”. Once Julian was able to walk and talk, the joint adventures began. They have rode in laundry baskets down our stairs, made a slip n slide on the kitchen floor, slid down the driveway on sleds, gotten injured together (Julian ended up with staples in his head) and many more things.

Now they team up to see who can annoy Lily and Mom the most.

Most of the time, the boys are low-maintenance and I appreciate this. Sometimes. I don’t appreciate them wearing the same socks for four days in a row, using their bed as a trash can or any of the other many gross things they do. Ew. My boys have shared a bedroom since Lily was born. They’re cool with this, probably because they can stay up late, talk and plot to take over the universe.

Science center bubble

Julian making a bubble at the Louisville Science Center

Being the mom of two boys has lowered my shock factor. At this point, if someone isn’t bleeding, broken a bone or the house isn’t on fire, I’m good. As of writing this, two out of the three have occurred- no worries, my house has never caught on fire. Boys have been much easier to raise- they do get mad, they cry, but with a lot less drama involved.

Well, with one. Julian and Lily participate in what I call “The Petty Olympics” to see who can fight over the smaller things. This, of course, is when Mom is done for the day, maybe even the week.

We feed them, keep them clean, medicate them (both are on meds- Cameron takes one for migraines and SVT and Julian has his ADHD meds) and love them. I think they’re doing pretty well. Keeping them clean is a bit interesting- their showers are destroying our water bill. Lily needs a bit more to keep going but some kids do. We’re okay with that.

Magic house pic

Cameron at the Magic House in St. Louis

I’ve been very lucky to been able to have these kids. All jokes aside, they complete my life.

Do you have kids of both sexes? What differences have you seen? If you don’t have kids, what do you think?

Twin Mummy and Daddy

Brilliant blog posts on HonestMum.com

Medicating ADHD: Pros, Cons and Alternatives

My mom once told me that had ADHD been widely known about when she was a kid (she’s 61) she would have most likely been diagnosed. This, in part, explains why she and Julian get along so well. She understands him more than almost anyone else in the family. My mom is the oldest daughter of four kids (she has an older brother, a younger sister. Her youngest brother died when I was nine.) and was constantly in trouble as a kid. She hated school and had problems concentrating.

I asked her if she had been diagnosed, would she have been medicated?

“Probably not. It was the 60s, so I’m pretty sure my parents wouldn’t have thought about it.”

The medication debate continues 50 years later.

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The Julian Perspective

For the record, Julian is medicated. He was diagnosed with ADHD (severe, combined) when he was 5. He was very aggressive and destructive- his siblings wouldn’t play with him and he almost broke my nose while headbutting me during what I now know was a meltdown. He also barely slept, and for a 5-year-old, that can cause a lot of issues.

It was a tough decision for me- my husband barely gave input, so I made the decision on my own. I did a lot of research. I didn’t want to make Julian a “zombie” but I did want him to stop tearing my house apart and be able to play with his siblings again. It broke my heart that Cameron and Lily were afraid of him. I was also worried about his education- he was barely able to sit in school long enough to learn anything.

Vyvanse didn’t go so well- it did what it was supposed to, but it also stunted his growth. He was off it in six months. Julian barely ate, and as a result, he didn’t grow at all. This medication also irritated his stomach. Even now, at 12, he’s still small for his age.

At his last checkup, he weighed 101 lbs and was 4’9″. Don’t let the small size fool you- I feel terribly for the first kid that tries to mess with him at school. Julian watches wrestling and is strong for his size.

We also tried Tenex for sleep, and this worked for a couple of years until it caused an uptick in aggression, which it is known to do in kids on the spectrum, so we switched to Clonidine. He has done wonderfully on this and is currently taking it. He takes it nightly and everyone is glad to see him sleep. A cranky Julian is not fun. When he’s cranky, he’s more likely to have more behaviors, and I know it’s not his fault.

After Vyvanse, we tried Concerta but never got to a dose that really helped him. I didn’t like the side effects that he might have faced if he went up to the next dosage (increased aggression, decreased appetite, etc) so we chose to try Ritalin LA. This is what he is on now. He seems to be doing well on this, so he will remain on it.

I’m really picky on changing his medication and dosage. I won’t change the dosage unless I see major changes, or he’s hit a growth spurt. We just increased the Ritalin over the summer because he hit a major growth spurt. I don’t want to mess with what works.

He takes his medication daily- he knows this is not an option. I’m hoping he doesn’t start fighting me on this as he gets older as I hear some kids do. He’s been on medication for so long that I don’t think this will be an issue, but it’s in the back of my mind.

Julian has missed days on his meds- sometimes we forget by accident or he’s been sick, but if we somehow forget, he knows he is still expected to try his best to have a good day. ADHD and autism are not an excuse for bad behavior. Things happen, meltdowns do occur, but it doesn’t give him the golden ticket to do things on purpose. (This is what happens when Mom works in a mental health facility for four years with kids with developmental disabilities.)

When he is on his own, in college, or when he moves out, I can only hope he is either off meds by then or is responsible enough to remember on his own to take his meds. This will be a goal to work on in high school.

Putting Julian on medications was a difficult decision, but it was one of the best things I have ever done for him. As my mom put it, we got Julian back. I have nothing against parents who don’t medicate- every family is different. Every family has to make that choice.

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Pros and Cons of Medications

ADHD meds come with their own set of side effects, like some that I mentioned. They can also include heart issues, upset stomach, shakiness, sleeplessness, headaches, tics, and more. I highly recommend researching and talking with your child’s prescribing doctor (pediatrician, psychiatrist, psychiatric nurse practitioner, etc.) before starting any medication.

Pros:

  • help with the most challenging symptoms like: inability to concentrate, impulse control, low frustration tolerance
  • can be taken once a day in small doses
  • fast-acting in severe cases

Cons:

  • Side effects can be severe (as in Julian’s growth issues)
  • Can be abused (in some situations, like in college students)
  • Are not recommended in children with heart conditions (stimulants) but there are non-stimulants available

This is just a small list of pros and cons, please consider your child and family’s situation before deciding on medication for your child. There are many different medications on the market for ADHD- including pills, patches and liquid medications.

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Treating ADHD Without Medications

ADHD can be partially treated with medications, if that is your choice, but to get a full treatment experience for your child, there are other options to explore. I’m not a fan of the many different diets that I have been told about, because Julian’s a picky eater and I have two other children to feed. It would spell disaster.

I am, however, a fan of therapy. He sees a psychiatric nurse practitioner monthly and spent a year in group therapy for social skills. It was a great investment. Please check with your child’s insurance carrier to see what is covered and if needed, pediatrician, before starting anything new.

Behavior Therapy- This is a structured strategy that teaches new behaviors to replace old ones. This can be effective for kids under 5 and older kids. Cognitive Behavior Therapy can also be helpful- this helps change irrational or negative thoughts that get in the way of getting things done or even staying on task.

Supplements- Please discuss this with your child’s pediatrician before trying this. There are many vitamins and other supplements that have been found to help kids with ADHD. Every child is different, some may work, some may not. Iron, Zinc, Omega-3, Vitamins C and B6 are a few to consider.

Brain-Training Programs- These are relatively new, and they help improve working memory. Some even help increase attention and reduce impulsvity by simply playing games. The games are designed to make parts of the brain that may not be working at their best work a bit harder.

Mindfulness- This helps decrease stress, develop positivity, and strengthens self-regulation. These can be very helpful in kids with ADHD. There are many videos on YouTube to get started with, and can help decrease anxiety.

These are not the only ways that ADHD can be treated without medication, there are many others. This journey is an interesting one, and parents have to stick together.

Were you judged for medicated for medicating or not medicating your child? Leave your thoughts in the comments.

Pics courtesy of Unsplash

Information courtesy of Additude Magazine

Smart Kids with LD