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?

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.

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.

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.

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

Ten (More) Fun Facts About Me

I shared some facts about myself many months ago in a previous post Fun Facts

Ready for more fun facts?

1. I’ve dyed my hair just about every shade of red. I love red hair but clearly wasn’t born with it. There have been a few disasters but it was fun while it lasted. I went back to my natural color, black, because Lily couldn’t remember what my hair looked like when it wasn’t red. One of the kids I worked with called me “Redhair” because it stood out so much.

2. I can’t bake. Many muffins and cookies have been burnt in my attempts but it just hasn’t worked out.

3. I can put on lipstick without a mirror, but other makeup requires a mirror.

4. I’m the only person in my immediate family with a BA. My older sister is a pharmacy tech.

5. I learned how to read when I was three years old.

6. I’m afraid of deep water. I don’t go in water deeper than 5 feet.

7. My favorite poet is Lang Leav.

8. The makeup I wear the most is mascara. I get cranky when I’m critically low. I prefer waterproof because as my grandmother once told me “You never know when you might cry.” She introduced me to makeup and it’s been a love affair ever since.

9. I’m not a morning person. I’m stiff (most mornings) thanks to RA and I have to take thyroid medication when I get up. I’m a snail until I am ready to interact with others. If I have something to do, I set an alarm super early because I know it will be a struggle.

10. I love cherry flavored almost anything but I don’t like cherries. Weird.

That’s it for now!

5 Ways to Conquer Self-Kindness

Being kind to yourself is a bit more complicated than it sounds. You don’t always have to buy nice things for yourself or take trips in order to reach this goal, but those things are great. There is a bit more to it.

How Can I Be Kinder to Myself?

Take a look inward. Are you often critical of yourself? I struggle with this a lot. I have to remind myself that people aren’t always out to hurt me or bring me down. There’s lots of self-talk involved daily. Thanks to therapy, that has improved. It didn’t happen overnight- it took months. It takes time to reset the thoughts that have spent years going through your mind. Change isn’t easy. Nobody’s perfect. Those changes have to start as small ones, otherwise, you’re setting yourself up for disappointment. Reading Conversations with Ourselves may help a bit in this area.

Another step is to take care of yourself in times of stress or emotional difficulties. You’re worth that care. It is a great feeling to feel this worth- everyone should experience it. This may consist of finding self-care that works for you. Some prefer baths, face masks, teas, cuddling with a pet, or listening to soft music. Anything that is peaceful and soothing can be beneficial. Self-care can go a very long way in showing yourself kindness- you don’t have to be “on” all the time.

Accept yourself exactly as you are. This may be one of the biggest steps in self-kindness. Everyone has something they don’t like about themselves. I admit that I wish I was a more patient person. I’ve tried working on this but I have come to accept that…it’s just a part of who I am. It has taken a long time but I accept myself as I am. (Again, lots of therapy was involved.) If you can accept yourself as you are, that is a very big message of love. It’s okay to be different from others around you.

Listen to you. What do you need? Everyone has different needs. Some prefer to be alone a lot, or maybe just sometimes. Some need to be around others constantly. Listen to your mind and body. If you get exhausted just being around two or three people, take a break after an hour. Socializing can be hard.

Finally, provide for yourself physically. Self-awareness is key to self-kindness. If you need medication, take them. If you need to see a specialist, go. I require thyroid medication daily for the rest of my life and I don’t play with that. I can get very sick if do. Need to lose or gain weight? Work on a plan. We only get one body. Don’t destroy it.

I wasn’t aware of the true importance of self-care, self-awareness, and self-kindness until I got into therapy. Life happened. These three things are super important to our mental wellbeing.

Info courtesy of Psychology Today

Pics courtesy of Unsplash

Moving Forward: The Last Fifty Years of Psychiatry

I’ve read a lot about the history of psychiatry. It’s interesting. Lately, I’ve taken an interest in reading about how patients were treated in the past in “asylums”, now called mental health facilities.

Most of the treatments would now be considered illegal. Many of those psychiatrists, nurses and “orderlies” (today, they would be called mental health workers) would be fired and probably jailed, among other punishments.

The buildings were in terrible shape, the patients were barely fed, clothed and heavily medicated so they wouldn’t have to be dealt with. When the staff did have to do anything with them, it was far from therapeutic. Many patients were terribly abused- physically, sexually and emotionally. This is a horrifying thing to me, as a person that has spent their career working with patients in various settings. Even if I didn’t, I still have a heart and it’s just wrong. I discussed this a bit in Book Review: “For Their Own Good”

Call me a “psych nerd” if you will, but I didn’t spend 5 years getting a BA for nothing, everyone. I’d go back for a Master’s, but the way my short-term memory is set up, I’d need someone to re-read my notes to me daily. School isn’t an option for me at this point, so therefore I read. A lot. My specialty is not in pharmacology or neurology (that’s why my insurance pays my adorable neurologist to give me shots to prevent migraines every 12 weeks) so I’m going to skip all the great big words today and break it down to the good parts.

The Progress- Medication Is A Good Thing

Over the last 50 years, medications have been coming out quite often. There are so many commercials for anti-depressants these days, I’ve lost count. The side effects of psychiatric medications started out to be bad ones- for example, tardive dyskensia. This is about the worst side effect I have ever seen in a medication.

It was mainly seen in the very first hardcore medications, like Thorazine, which came out in the 1950s. This affects facial muscles, and they can twitch horribly, on either one side or both sides of the face. It can be stopped if the doctor is told quickly, and the dosage is lowered or medication is stopped completely (another issue within itself) but once it sets in, it is most likely permanent. It can also come in the form of tongue clicking. The patient may not always realize that the movements are going on and that can put off the timing in which the doctor is notified.

These days, this side effect has been greatly lessened thanks to the ability of patients to notify their doctors and the FDA of adverse side effects and the reformulation of this and similar medications. Weight gain has been another big woe for many that take anti-depressants and other psychiatric medications. There are medications currently being released that are weight-neutral so that patients aren’t so afraid to take them. This can be a relief. It’s not fun to take meds when you worry about gaining 15 lbs in 2 months. Some stop taking their meds for this reason.

Another advantage of medication over the years is extended release- patients don’t have to take as many pills during the day. In other medications, this may not be an option, but in many psychiatric medications, including Julian’s ADHD meds, the extended release option can be a great thing. It allows patients to plan their days a bit easier without having to stop and take pills throughout the day. There still may be a need to take night medications, but it’s definitely an improvement.

The Larger Changes- Treatment As A Whole

Brain imaging has become a way to help with understanding the brain structure regarding mood and psychiatric disorders. This helps with research that will assist future diagnoses and book writing. Genetics are being used to help with diagnosis. It is starting to be seen that many psychiatric disorders are caused by a gene and environment interaction, which again leads to further research. This can help those in the future know signs and how to help others.

In the 1970s and 1980s, there was a movement to deinstitutionalize patients. Many had been in facilites for years and weren’t prepared for life outside them, so when they were released, many started committing crimes and/or using substances, which led to jail. Currently, there is a movement to avoid jail when possible and move those in this situation towards a rehabilitation facility, mental health facility (in or outpatient) or into another setting. Jail or prison is not a good setting for those with mental health issues.

Many insurance companies only cover so many days of an inpatient stay at a rehabilitation or mental health facility. I’ve seen people leave facilities that I worked in for this reason, even though they were not ready. This usually leads to them coming back because the issue they came in for wasn’t resolved. This leaves me at a loss. Most people cannot afford to cover the days left over after the insurance stops paying but yet need the treatment. What options does one have besides leaving? Many outpatient facilitites do operate on a sliding scale, which is a wonderful thing, but there are a lot of people that need the specialized care that inpatient facilities provide.

There are now laws and regulations against patient abuse. Thanks to the jobs I’ve had, I have learned a lot about them. Unfortunately, there are people that break them everyday and those people should not be working in this field. There are also a lot of policies out there and whole agencies that make sure mental health facilites are clean, safe and make sure their employees are well-trained. (I seriously hated those inspections. I won’t lie.) Each state has its own set of laws on how to get someone an emergency psychiatric evaluation. It’s not easy or pretty to do so, but it can save a life. These laws have come into focus over the last couple of decades.

Advocacy has also made a huge splash. There are so many groups that have started to advcocate for those with mental illness. NAMI and AFSP are just two groups, but there are many more.

Moving Forward

There is always progress to be made. I’m curious and pretty much don’t stop reading, so I’ll be learning more as this field grows.

Pics courtesy of Unsplash

Information courtesy of: Health Affairs

A Beginner’s Guide to ADHD

Most kids are not quiet. They tend to be loud, run around and get into things. Some kids are a bit more adventurous than others. They are easier to anger, yell or interrupt us. Maybe all of the above and more. This can go on for years past the “terrible twos”, which is supposed to end by age four at the latest.

The Trip Into the Unknown

There is not a certain day that I knew that something was a bit different with Julian. I just knew. That story can be read in Looking At The Bright Side

It’s incredibly difficult to realize that your child may need to be evaluated for any reason. You may question yourself as a person, as a parent. I did this daily. Matthew did this towards me and things went badly between us after that.

There are many books to help get you through the diagnosis and afterward, but what about the unknown? There are support groups for this. I’m in a couple on Facebook, both local and non-local. They’re helpful for almost any question I’ve had in 6 years.

The unknown is scary. Why didn’t I see this earlier? What’s next? What about when my child is an adult? What about medication? These are just a few questions.

Just about every parent has a moment that snaps them into action- a play date gone bad, daycare/school issues or other similar reasons. I realized things were adding up to not being the way they should be. Julian was still having loud and destructive tantrums, very aggressive and his siblings were scared of him. Plus he had problems sleeping and was very hyper.

Julian has always loved bugs..one of many

Looking For The Signs

The signs of ADHD are usually hit-you-in-the-face obvious, at least with boys. With girls, it may be less obvious and diagnosed later. Many boys are diagnosed as early as four or five (Julian was five) but because of personality differences, most girls are diagnosed as late as 10 or 11, if not older.

This information can be found on Additude Magazine

Main Signs of ADHD:

1. Problems with concentration and/or retaining focus on school work, household chores, etc. This can mean incomplete work, half done chores, missing homework, etc.
2. Easily sidetracked or loses focus.
3. Doesn’t seem to listen when being spoken to, like their mind is off somewhere else.
4. Difficulty keeping belongings organized- school supplies, sports equipment, or even losing clothes, glasses or toys.
5. Forgetful in daily activities. This can include chores, homework or other things asked of the child.
6. Often has problems sitting still, staying in one place, seems driven by a motor or “fidgety”.
7. Talks excessively and/or constantly interrupting others’ conversations.
8. Difficulty waiting their turn.
9. Runs and/or climbs in inappropriate situations.
10. Intrudes on others repeatedly.

There is a timeline that these behaviors have to be observed for, and this leads me to the next step.

What’s Next?

I highly recommend speaking to your child’s pediatrician. They will know how to screen him/her for ADHD and if needed, refer them for testing. Julian was first seen by his pediatrician and then evaluated by a neuropsychologist.

If your pediatrician screens your child for ADHD, they will have you fill out a questionnaire and have your child’s teacher fill one out if that applies. It’s a pretty simple questionnaire. It helps them see what is going on from your perspective and an educational one.

The same will occur if you are sent for an evaluation. The evaluation may be one day or spread out over two. This depends on the testing itself and your child.

Each practice differs on results, so please ask about how long those take when you are setting things up. The wait can be excruciating. Our wait was two weeks but it crept by.

Mother’s Day 2012 at school

Moving Into The Future

Once you have a diagnosis, you will have a better idea of what to do. There are options, depending on what you feel works for your child and family. Medications aren’t for everyone but they definitely help. Julian has been medicated since not long after his diagnosis. It was a difficult decision to medicate a 5-year old that was already small for his age, but I am very glad that I chose that route.

Most kids with ADHD struggle in some way socially, and Julian is one of them. This didn’t surprise me since he also has autism, but it also broke my heart numerous times. He was placed in social skills therapy, as recommended by his former psychiatrist.

This social skills group was great and he went for almost a year. He learned a lot and has made a lot of progress in this area. I will discuss getting outside help for kids with autism and other disabilities in an upcoming post.

The main options include:

1. Medication
2. Therapy- occupational, social, physical, and/or for emotional issues
3. A combination
4. As recommended by your child’s pediatrician.

Finishing group therapy!

ADHD can be a hard diagnosis to figure out, especially in the beginning. There’s still a lot of stigma behind it- if others around understand more, we can help our kids be understood a lot better.

Have you had issues with getting your child screened for ADHD? Are you worried about a child that is showing symptoms? Leave your thoughts in the comments.