Want to go home

A Bit of Humor

I thought I’d bring some humor to the blog, since my latest posts have been a bit heavy.

This is usually how I start my day. Most people open their playlist for a boost or listen to the radio… I’m looking for the newest episode of a true crime or murder related podcast. My kids are always teasing me about this. I promise I do listen to music. Stay tuned for tomorrow’s Song Lyric Saturday.

Kids are loud and get into things.

A lot.

I don’t recommend duct taping your kids to anything, it is a joke.

I’m not the only woman who’s bought something after having this convo with herself. Lots of clothing, makeup and books have been bought this way- maybe or maybe not in the same shopping trip.

Life is like that sometimes.

Eyeshadow and a new shirt just calls my name and maybe…my wallet needs to shut up.

My cats have different feelings about belly rubs. Miss Purr prefers we spend hours rubbing her belly. Tails? Nope. He rarely allows us to give them and he resembles the cat in the picture when he is done with it.

“Time to attack. I am done with this”

*attacks human*

I’ve become somewhat more introverted over the last few years. I don’t like getting out as much as I used to unless it’s with people I already know.

My top reasons for wanting to go home? I want to read and sit with my cats. I might be slightly tired.

Have a few laughs and an awesome day. ๐Ÿ™‚

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 Siblingsโ€™ 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

Getting Assistance for Your Child: Essential Questions to Ask

It’s Not a Parenting Failure to Get Help

I once told my mother that there is a reason that people spend a long time in school, take really hard tests (in some cases, more than once. I’ve been told the BCBA exam is horribly difficult) and get observed for a lot of hours to become mental health professionals. They are dedicated to what they want to do. They have to continue that education by taking classes and renewing their licenses every so often. States want to make sure these professionals know what they are doing and do so ethically. I also told her that there is only so much that I can do as a parent, even knowing what I do. There are a lot of things that I don’t know, and that’s why I felt that at one point, it was time to get outside help for my kids.

In Lily’s case, there wasn’t much of an option. Her delays were severe and required outside help. She needed help learning how to walk, talk and do other tasks that I couldn’t have taught her on my own. In the beginning, I really did blame myself, but after hearing that there was no way I caused her delays, I felt a lot better.

Julian definitely caused some debate. I knew what I was working with after he was diagnosed, and yes, I could have worked with him on my own. With two other kids and a full-time job, plus not really knowing what to do or how to do it, it really was time for the pros. He’s been to group therapy for social skills, which helped a lot. Every Tuesday for almost his entire third-grade year, he got out of school early to go to group. He learned how to interact with others appropriately, to speak up, along with other things. Julian is a quiet kid by nature, and we’re okay with this.

I just don’t want him to be so quiet that he is ignored or entirely left out. He has also seen a psychiatrist, and we loved her. Unfortunately, she had to stop seeing patients after some post-birth complications, so now he sees a psychiatric nurse practitioner.

It is okay to get outside help. We’re not just parents- we are also humans. We don’t know everything, and that’s okay. Your child will benefit greatly from outside services.

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Finding Assistance

There are many ways to find providers, it mainly depends on what you need and if you already have someone helping you, like a social worker or someone similar. If you’re looking on your own, it always helps to start by asking other parents you know that are in a similar situation. You can also ask your child’s pediatrician.

That’s where we started with both Lily and Julian. We moved around a bit by referral. It just so happens I used to work with the psychiatrist that started the practice that Julian is at now. (He’s absolutely great, but for obvious reasons, he can’t see Julian.) If nothing else, there is always Google. Google is everyone’s friend.

A Few Definitions:

Provider- a professional that provides some sort of service for your child

BCBA- Board Certified Behavior Analyst (these people do great things, lots of behavior modification, addressing challenging behavior, among other things)

DSP- Direct Support Provider (people who come into your home and work with your child on life skills, social skills and other things they may need. I worked as one for about a year and it was a lot of fun.)

Respite Care- to give parents or other caregivers time to care for themselves, run errands, etc while their child is being cared for.

I highly recommend checking with your health insurance carrier/Medicaid to see what is covered. These services can get very expensive, and insurance paperwork can be a huge challenge. Waiting lists are a thing and can be very long. It can be a bit weird seeing people you don’t know in your home and working with your child. This may take a while to adjust, especially if there are multiple people. Lily had three therapists a week at one point and it was a very weird thing. If you need to set limits, set them and be as firm as you need to be.

What You Should Ask

There are some questions that can’t be missed like:

  • What is your availability?
  • What experience do you have with this population?
  • Are there behaviors that you feel are too challenging for you? Everyone has their limits, and this is okay. My personal limit is spitting. Can’t do it.
  • How do you view your relationship with the rest of the family- siblings, parents, etc?
  • Best way to reach you? Phone, email, text?
  • How will you update me on my child’s progress/needs?
  • Emergency preparedness? Most agencies have trained their workers on a plan for this, so make sure to ask. The practice I worked for had a very detailed plan for injuries, weather and other emergencies.
  • References.

Of course, follow your intuition on the people/places you look at. If it doesn’t look right for you, most likely it isn’t. You will know when you find the right place or person for your child. Call those references. Read through the notes you made during the interviews. Do your research. You’ll thank yourself later. If you are looking for your child to be part of a practice, the questions above will be slightly different. Most places will allow a walk-through and give you someone to talk to. They’ll be able to answer questions, give you information to take home, and follow up.

The road of parenting is sometimes a rough and bumpy one. Looking for outside help is just a small speed bump.

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Information courtesy of Seattle Children’s Blog

Pics courtesy of Unsplash

Easy Peasy Pleasy

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Twin Mummy and Daddy

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Healing Through Creativity: Art and Hippo Therapy

Throughout my career, I’ve been lucky enough to work with some truly awesome people. I’ve worked with teachers, nurses, psychiatrists, and more. I’ve seen some of my mental health worker friends go on to do some great things. Some have become nurses, teachers, and one has become a psychologist (he started out as a program specialist). I wanted to examine “unconventional” types of therapy, meaning those that you wouldn’t usually see in an office setting.

Today’s post features two of my former co-workers from the same facility. Brenda was a special education teacher who retired in 2017. She was one of the best teachers I’ve ever met and also has been a great friend- during my bad times, I would sit in her classroom and cry. She’s given me lots of pointers in life and is so much fun to talk to. She also has a great passion for horses, which led me to talk to her about hippotherapy.

Ashley was a mental health worker and she shared the same passion that I did for the kids we worked with. I wasn’t able to work with her very long because I left the facility. She’s a very sweet woman, and I was delighted to hear of her becoming an art therapist. I’m always happy to hear when people reach their dreams and move on to better things. When I came up with the idea for this post, I knew she would be the best person to ask.

Thank you, Ashley and Brenda. It means a lot that the two of you took the time to talk to me.

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Art Therapy is More Than Just Drawing

Admittedly, I don’t know a lot about art therapy. I didn’t even know what kind of degree is needed to be an art therapist. I know that it is done mostly in groups, but can be done individually. It can also be done in hospitals or in other settings. Luckily, Ashley knows a lot more. I was able to contact Ashley via email due to her busy work schedule. She works at a juvenile correctional facility in Louisville, KY as a Mental Health Professional.

Ashley graduated in 2016 from the University of Louisville with a Master of Education in Counseling and Personnel Services degree with a specialty in Art Therapy. She has become a Licensed Art Therapy Associate (LPATA), Registered Art Therapist (ATR), and Licensed Practicing Counselor Associate (LPCA). She is scheduled to take her exam to become a board certified Art Therapist in September. She has been working in this area since September 2016.

I asked what inspired her to go into art therapy and she stated this (directly from her email):

I graduated from Georgetown College in May 2010 with a Bachelor of Arts degree. I specialized in studio art throughout my undergraduate studies. The therapeutic relationship with my artwork is what really sparked my belief in the healing components of art making. I was able to use my artwork as a way to express myself freely and honestly. Having an uncensored outlet allowed me to confront grudges of a traumatic childhood and process through mental health issues that stemmed from it.

Artwork was the one thing that challenged me to face my fears and empowered me to overcome them. After doing some research, I was thrilled to learn that art therapy existed AND that there was a licensed profession to boot! There was no question that this was my calling. Here I am, 8 years later, assisting others in finding their own strength and paving their way to freedom.

I thought this was an amazing response, which is why it is directly quoted. Once you find your passion, I’m a firm believer in doing it. Ashley is one of the lucky ones. I have also been lucky enough to live mine, in some way or another. Mine was to help people- over the past decade, I have been able to do that. Some people never find their passion, and that is a very troubling thing.

Art therapists work in a variety of populations and locations. They also work in different art mediums. Ashley works with a really interesting population- incarcerated adolescents. I’ve worked with kids similar to this, and it can be very challenging. She says:

I provide individual and group psychotherapy that incorporates art therapy assessment and intervention. Art therapy assessments are used to gather information, assess their mental state, and determine their mental health needs. Art therapy interventions are used to help clients express themselves and explore aspects of their life that they may have suppressed or struggle to confront. Both art therapy assessments and interventions utilize art media to include 2D and 3D materials. Art media is determined upon client’s presenting mental state and concerns that are being addressed. Art media can range from drawing with a pencil on white paper to constructing large sculptures with found objects.

There are misconceptions about art therapy, and I asked Ashley to address those. Her response was:

The misconception I run into most is that art therapy is viewed as a leisure activity and often discredited. I wish I had a dollar for every time art therapy has been referred to as “art class” or “play time”. Art therapy is one of the most effective forms of mental health treatment because it allows access to suppressed memories, thoughts, and feelings that many cannot or will not express on their own. I’ve had many clients’ artwork that “accidentally” shares aspects of themselves and their lives that they had no intention of disclosing. Often times, these “accidents” expose the true, underlying issues of mental health concern. Art therapy has the potential to break down the walls that reveal that not-so-perfect road that people have detoured. It just so happens that this journey down that not-so-perfect road comes exclusively with color, creativity, and a chance to step out of your comfort zone!

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Hippotherapy Isn’t About Hippos

Brenda has a deep love for horses, and she even had one named Billie Jean, after the Michael Jackson song. He was her favorite singer. I had no idea that horses needed a test to be able to be considered for hippotherapy until we discussed the questions for this post. (Brenda and I had a wonderful lunch.)

Temperament Is Important

Horses have personalities just like we do. Some are calmer than others, some listen to commands well and some don’t. However, some horses just know to be gentle with people. A hippotherapist is usually a Physical or Occupational Therapist, and they have assistance from others to encourage both the horse and rider. These therapists have studied anatomy and other areas to know what will be therapeutic for the rider. Riders can go with or without a saddle pad. Sometimes a Speech Therapist is needed to help the rider with speech issues, for example, the child can try to give small commands to the horse as a part of therapy.

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Connections Are Made

Brenda has been a side and lead person in hippotherapy sessions, mainly due to her experience as a special education teacher. This means she has led horses and been on the side to assist children and adults as they ride. She currently works with adults with disabilities with tasks such as giving horses baths and grooming. This is done at her barn.

Brenda told me a story about a child that she once saw. *Laura was a child with autism and was non-verbal. She had limited social skills but loved horses. Her mother took her to the country a lot just to look at them. She also spent a lot of time drawing and looking at books about horses. Her mother, however, was terrified of horses. An older horse, about 25 years old, was found for Laura, and she was allowed to ride. After three sessions, she was more confident. She wanted the reigns, was all smiles and seemed more independent. After eight sessions, she got off the horse, hugged her and said, “I love you, Betsy”. Three days later, she told her mother “I love you, Mom.”

When a non-verbal child speaks, it’s a big thing. It’s even bigger when they say “I love you” to a parent.

That shows the power of a horse.

Misconceptions of hippotherapy

Brenda stated that the main thing that she has seen is that people don’t know enough about the healing power of the horse. This is true because I don’t know anything. Most people I know don’t. Special needs children have a hard time expressing themselves, so it is hard to explain it to others. This is very understandable. It definitely deserves more research and understanding.

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Would you consider unconventional therapy? What do you think of art, hippo, music or other therapies?

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