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

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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

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.

Worthy

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.

Love

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.

Love in lights

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

Brilliant blog posts on HonestMum.com

Twin Mummy and Daddy

Broken Wings Part 5: What I Wish My Spouse Knew

What I Wish My Spouse Knew About Our Child With Special Needs

This series was inspired by a Facebook post I read six weeks ago. A member posted this question “Does having a special needs child affect your marriage?” Post after post, people shared examples of how their marriage was tested. Some made it, others did not. I always wanted to create a platform where people could talk and share their experiences, the good and the bad. I cannot thank my collaborator Wrae Meredith Sanders enough for her open and honest contributions. Whatever your decision is, I hope you know you’re not alone and you will make it.

This is the last part of this series. Please feel free to like, comment, and share.

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There are many things that I can look back on now and wish that I could change. I’m unable to change the damage that was done to our marriage- both of us did things that we regret but we have been able to move forward together.

If I’d known that we would disagree so much and loudly, I would have shut the door a little more. I would have stopped and asked for a break–this would have helped more than we realized at the time. I would have asked why we had to be right all the time instead of coming up with a compromise.

Julian Needed Us to Come Together, Not Fall Apart

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If I’d known then that I’d spend many nights crying myself to sleep for so many reasons, I would hit the rewind button. I would figure out each separate reason instead of letting it all become a big ball of depression.

I thought I was doing the right thing–fighting you for Julian’s needs. This turned out to be two evaluations, a diagnosis of ADHD (combined), traits of Asperger’s (later amended to High Functioning Autism) and medications. He also needed group therapy.

Moms are supposed to do what it takes for their kids, right? The only thing is, I did it alone. I didn’t listen to you. You didn’t want any of these things to happen because you were in denial. If I had known what to say and not be confrontational, I would have done it. But I didn’t. That’s where I went wrong.

I tried explaining, even in a way you could understand but that didn’t do it. In your family, disabilities aren’t real unless you see it. Julian has the kind you can’t see. You couldn’t see it, so it didn’t exist. This even applied when Julian almost broke my nose and I had to get X-Rays.

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I sought out ways to deal with the loneliness. When your husband is in denial and emotionally bashes you daily, you have to find a way to cope. I drank. That was not productive at all.

I went out a lot with people who turned out to not be good for me, you even tried to tell me, but I didn’t trust you enough to care. I worked out in the gym obsessively and lost 60 lbs. Even my doctor was concerned. I barely ate for days on end. This didn’t help my decision making.

What I Know Now

We worked hard to put this family back together. I still have problems opening up to you this day. I finished therapy two months ago. You were there from day one to the last and cheered me on the whole time.

During that time, Julian has grown, and he has done well. He finished group therapy and dealt well with a change in providers. He is going into the seventh grade after a few bumps adjusting to middle school.

You’ve become so supportive of Julian and I. When he has a bad day, I know I can tell you about it. You’re happy when he does well. Raising kids isn’t easy and we have three. Having a kid with special needs makes things a bit more interesting and sometimes difficult. I’m glad that both of us decided to make this work.

Thanks. I know Julian wouldn’t say it but I’m sure he likes his mom and dad being together.

Love always…

Wrae

What I Wish My Husband Knew About Being A Special Needs Mom

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Dear Husband,

Never at the age of forty did I dream I would marry, then become pregnant a few months later. It took us both by surprise yet we agreed to go on this wild journey called parenting. I had a little more experience with raising a child as my daughter was fourteen when we tied the knot.

I was fat, tired, and cranky–everything a pregnant woman is and probably will be as long as little humans continue to beautifully invade our personal space. There were precautions because of my age and health, but I was sure I would go full term.

But I didn’t. He came nearly three months early. After a long stay at the hospitals, oxygen tanks, and therapy, our baby boy could live a normal life.

There’s Something About Keith

We both noticed how energetic he was, how once he started talking he couldn’t stop, and how sleep evaded him. No worries though, I sleep trained him. Plus, kids are naturally talkative and hyper, right?

But he never slowed down. After being kicked out of two daycares, we had him evaluated. I already knew, but I wanted to hear the doctor say it. He had ADHD.

Now here’s where the story starts to fall apart

I ran straight towards the ADHD armed with books, natural medicine because our pediatrician refused to help him, and age-appropriate behavioral techniques. You ran in the other direction, straight to the door of denial.

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Days grew into weeks, months, and even years. Six years isn’t much time to some, but when a person feels like they’re carrying the load alone, it can seem like a millennium.

The feeling is familiar because I went through the same thing raising my daughter alone. I felt overwhelmed all the time. I feel that way now.

As the primary caregiver, I stay on top of his meds, homeschool him, and take him to the doctor’s appointments.

I know you can argue that since I don’t have a nine to five, I should be doing this anyway. I remember carrying the same load as a full-time working mom too.

And when you did participate…

Yes, you went to the doctor with us sometimes. You ‘yessed’ your way through the appointments, but the heavy part of the load rests on my shoulders.

When he’s having a bad day, I try to redirect. You punish him by sending him to bed.

If he talks back, I remind him that his behavior is inappropriate, you yell at him and say things he will repeat later when he’s frustrated.

Even when you excuse yourself from spending time with him, he loves you anyway.

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If I thought you would really listen to what I have to say, I’d tell you that you are creating an insecure man who will be afraid to share his feelings, think he isn’t good enough and may do inappropriate things to get attention.

But I’m not brave enough. What I am is strong. I’m strong enough to walk away and do it on my own.

I don’t want to, but his well being comes first. The only reason I haven’t walked away now is that much like a little girl, I have hope.

You’re not a bad person. That’s why I haven’t left yet.

Until then, I pray we can fix these broken wings.

Love,

Bonnie

Comments? Leave them below.

Thank you so much for reading this series! We appreciate your support during this month. If you missed any of the previous parts, you can catch up here:

Part 1 Part 2 Part 3 Part 4

Brilliant blog posts on HonestMum.com

Looking out

5 Ways to Set Healthy Boundaries

Some People Just Aren’t Worth Your Time

It isn’t always apparent right when you meet people if you can fully trust them or not. Some people put on a great facade and you can’t always see them for who/what they really are. It may take time to see through the fakeness to the deeper side, which usually isn’t pretty. People tend to hide the not-so-great things about themselves because they fear that they won’t be liked. If you’re generally negative, rude and extremely bitter about life in general, most people won’t want to be around you. You will attract others like you, but that’s about it.

These people aren’t worth your time, unless you enjoy being brought down by others. This isn’t great for your mental health. How do you set boundaries and cut these people out of your life if you need to?

Relationships need boundaries

Boundaries are a building block for relationships

Setting Healthy Boundaries

Boundaries are good. They help you feel a bit safer in your surroundings and relationships with others. They also give you a bit more confidence when you may need it. They do not appear overnight and do require a bit of time to develop.

  • Determine what your limits are- what you will and will not deal with. Everyone has their limits, and should not be surpassed. That is seriously unhealthy, and can become potentially dangerous.
  • Be direct. When speaking to someone about their inexcusable behavior towards you, being direct is the best way to go. They will realize at some point that you’re being serious (even if you haven’t before) and that while not being rude, you are setting some sort of boundary. Remind them of past events if needed. It may help them realize the damage that has occurred.
  • Resist arguments. One of the main goal of setting boundaries is to have a conversation, not an argument. It may get hard, but this can be done without fighting. Sometimes this requires a break and coming back to the discussion- this is okay. Just make sure you come back to it.
  • Take some space. Sometimes people need space after discussing things, either before things go bad and arguments occur, or afterwards to reflect and maybe think things out. Either is good.
  • Saying NO is good. Some people have a serious issue with saying “no” to others and this can become a bigger issue than anticipated. Making others happy is a good thing, but what happens when you become unhappy because you don’t have time to make yourself happy? That isn’t being selfish, it’s a matter of your health. Many don’t realize this is also a boundary issue. Start small on this one.

Those who truly want the best for you and care about you will respect the boundaries you set and adjust to the changes. Those who don’t? They may not need to be in your life and you might want to consider cutting them out of your life.

Looking out

Using the Scissors

In 2015, I lost someone I loved, quit my job and lost a handful of friends in the space of 2 days. That’s a lot. It took a lot of therapy to deal with that. It took that death to fully open my eyes to who I was spending a lot of time with. I was going out a lot with a small group of my co-workers. I already didn’t like one, so I stayed away from her when I could. The others had their own things I didn’t like about them, but they were generally a ton of fun.

What happened when I needed them the most?

They completely flipped on me. I was told some super nasty things and I didn’t take it well. I never went back to that job (except to get my things and write a note to my manager to tell her I wasn’t coming back and why. The online exit survey was a blast.) and in my efforts to cut people out of my life, my Facebook block list is about 100 people strong. I blocked those “friends” and anyone that associates with them because I didn’t want anyone to tell them how I was doing while getting my life back together. My Facebook remains on very private settings. That story is also told through a filter of grief, and grief will make you do a lot of things.

How do you say goodbye to people that aren’t good for you? In my case, I literally cut people off without a second thought. It was the best option at the time and as of yet, one person has tried to approach me on a different social media site. She was immediately blocked. I don’t suggest this option unless it is something extreme, like if you are in immediate danger or in a situation I was in. If you are honestly okay with cutting people off this way, then go for it. I’d love to hear your story. Send me an email, PM, or leave a comment.

Otherwise, I suggest something a bit gentler- like an email, text or a phone call. Maybe an in person meet up if you’re comfortable and you know nothing will go bad, as in someone getting aggressive. I’m all for people settling things peacefully. In the email, text, etc. try to sound as non-judgmental, mean, as possible. Things can get lost in translation. Just explain how you feel about the situation and that you feel that there is a need for a break in the friendship/relationship either for a certain period of time or permanently. If in person, let the conversation go naturally, because both of you know why you are there. Just be ready for an exit if things don’t go in the direction you plan for.

Hopefully you can come to peace with letting go of people that aren’t healthy for you. It will be a good thing in the long run. Your circle may be smaller but it will be stronger.

Pics courtesy of Pinterest and Unsplash