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

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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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Brilliant blog posts on HonestMum.com

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.

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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.

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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.

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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 and a worm

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.

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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.
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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.

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Run Jump Scrap

Book Review: “For Their Own Good”

I missed the book review last month. The book I had planned to review wasn’t as good as I hoped and I had issues finding another one and finishing it in time.

I like reading about old psychiatric facilities and what happened to them, even though I know it wasn’t the best treatment. I’m well aware that patients were not always treated humanely, and in some cases, this continues today in the face of many rules and regulations. This idea, quite frankly, makes me sick.

When I worked with patients, I tried my best to be empathetic and follow the things I was taught both in college, life and by the facilities I worked for. Those things go a very long way. Even if patients aren’t verbal, they can and do remember how people treat them. They can feel fear and joy towards certain people that treat them well or not so well. Patients that repeatedly return do remember how you treated them the last time (or maybe the last ten times) they were there.

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In this book, Bradette Michel tells the story of a young psychiatrist, Dr. Adam Fletcher, set in 1857. He is the new medical director of Illinois State Hospital for the Insane. When he gets there, he is not entirely sure what to expect but is not entirely happy with what he sees. Dr. McFarland is his new boss, and along with the Matron, walks him through the facility. There are three “wards”, each housing patients depending on the severity of their illness.

In Ward Three, the patients are held in restraint chairs- five points, to be exact. That means four for arms and legs, one for the patient’s head, which would make this illegal today. There was a hole in the chair for the patient to be able to use the bathroom, which would also be illegal today. (There are very strict regulations on this according to age and other factors.) Dr. Fletcher was very disturbed to see a patient in this chair, but yet, kept walking. How? He did not feel that he could say anything. He was new.

Dr. McFarland was very punitive-based, as many were during this time. He punished one patient by depriving her contact with her daughter simply because she was refusing her breakfast. Maybe she just didn’t like the food? Maybe she wasn’t hungry? Not everyone is a breakfast person. None of these were thought or mattered to him, he just wanted to be in charge of everyone and everything at this facility. He told the patient that they would start “bleeding” her if she did not comply with his order. He was much more doctor-based than patient-based. This might have been in 1857, but it was still very wrong.

Dr. Fletcher began to see the very hurtful things that were going on with the patients and how his boss really saw them and realized that he wanted to help them. He wanted to do more for them than what his boss imagined doing. Will, it cost him his job?

You will have to read the book to find out!

My series with Bonnie continues. Broken Wings Part 3: What Your Child Thinks About Your Divorce If you missed anything so far, you can read Part One and Part Two

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