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…

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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

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

Brilliant blog posts on HonestMum.com

Special Needs Round Two

The Unknown Begins Again

I never imagined having one special needs kid, but sometimes life throws you a curveball. Julian’s 2011 diagnosis of ADHD (combined) and autism changed our family forever.

Matthew and I did not do well for a few years after. He didn’t take the diagnosis anywhere near the way he should have and I went into a very deep depression, and I did not cope well with that.

Over time, Matthew did realize the damage he had caused to our marriage, but it was too late. I had made plans to leave him, and was 8 days from filing for divorce when Jake (the other man) died. It took a lot of thought, but I decided to stay and see what the future held for our marriage.

What happened to our marriage? Matthew didn’t listen. He blamed me for Julian’s behavior. He asked me why I wouldn’t admit I couldn’t handle him and Lily, who at one point was in early intervention for her developmental delays. He constantly criticized me. He made me feel like I was nothing. We fought constantly.

The kids heard almost all of this, which I tried like hell to prevent. He didn’t even want me to get Julian evaluated. I did anyway and he certainly didn’t like the results. I was devastated, but also relieved. I finally had something to work with.

Round Two Begins

We have always joked about Lily being a bit of a drama queen. I was a huge one as a kid, and my mom can back that up. Lily is very quick to cry and get overwhelmed. She is constantly anxious and hates changes in routine. She daydreams a lot and gets distracted super easily.

As I’m typing this, her room is a complete mess even though I told her to clean it days ago and made her a list of the steps she needs to get it done. We have tried everything I can think of to get this to be an easier task but… nope. It’s still a mess.

Lily had speech, occupational and physical delays as a baby and toddler, and we never knew why. This was called “unknown global delays”. She was born at 37 weeks and a day after a not-so-fun pregnancy. When she finished the early intervention program after two years, on her third birthday, I was told that I shouldn’t be surprised if she was a bit behind in some subjects in school.
This wasn’t completely untrue.

Lily struggled to learn to read, but she improved greatly after she read out loud daily almost everyday in first and second grade. She still does this, especially when she needs help with the bigger words. She also struggles a bit in writing. She absolutely hates math, but then, I do too. (This is one reason I picked psychology as a major- three math classes in five years, y’all.) She does seem to do well with science and social studies- in fact, she did better than both her brothers at the school’s science fair recently.

Her teachers tell me that she is a sweet girl, but does seem a bit emotionally immature for her age. I’ve already realized this.
Currently, she is seeing a therapist, and there have been small improvements. She loves her therapist, which is a good thing. However, she does get distracted when talking to him and we have to take away whatever is in her hands sometimes so she talks.

I’ve lost some sleep and time wondering if she isn’t on the autism spectrum, has ADHD or both. The stats are definitely there- if you have one kid in the family with either, there’s a good chance that another kid will have either or both. She does fit some of the criteria for both, and this worries me. I’ve asked her therapist for an evaluation for both.

For one, she’s 10. Why did I wait so long to get her to a therapist? Why did I wait so long to even think of an eval?

A Few Facts

Most girls with either ADHD or autism are diagnosed late, unless either is severe. I’ve seen this personally in my work with kids with autism. Girls with severe autism is a rarity. Boys? It’s a lot more common with this and ADHD. Boys with ADHD show their symptoms outwardly. For sheer example, Julian broke a foot and an arm before his diagnosis due to his hyperactivity and impulsiveness. Girls usually tend to be more on the inattentive side and that’s harder to see.

I’ve seen the signs in Lily, I just thought that was part of her personality.
She won’t walk to a friend’s house up the street alone, still refuses to ride a bike and stays inside a lot, preferring to color, draw, read or just play with the cats. There are kids she can play with in our neighborhood, she’s just not inclined. She does prefer younger kids or kids her age. I’ve tried to edge her outside a lot, but my efforts aren’t well absorbed.

I’ve focused a lot on Julian over the years. He requires a lot of my brainpower. Thinking about Lily has required a shift in my brain and of course, lots of guilt. Have I ignored her? This was a thought when I realized she had delays.

I wonder about my own ability to handle not one, but two special needs kids. Her therapist is fairly certain that there will be a diagnosis, but is not yet sure which one. Do I even have the ability to deal with this? Will she have to get an IEP for next year?

It’s almost March, which basically means it’s going to be next school year before anything really gets done. Will she have to take meds? Lily hates meds. She doesn’t even like taking meds when she is sick. I can’t imagine trying meds now. She’s gotten this far without them, but that doesn’t mean they won’t help.

So here goes round two. I have no idea what is next. I’m worried. I’m not sure I can do this, but I don’t have a choice but to keep moving.