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

Broken Wings Part 2: Divorce Preparations

Broken Wings, Part 2: Divorce Preparations for Your Special Needs Family

by Bonnie Harris Price & Wrae Meredith Sanders

Special needs and divorce; these two words shouldn’t be in the same sentence. Yet more and more families split up because the demands are overwhelming.

Counseling didn’t work. The long vacation meant to help your family reset didn’t work either. It may even seem like your prayers to reconcile went unanswered too.

Then, the inevitable happens. You and your significant other decide to divorce.

Ending your marriage is hard particularly if you have children. Yet when your child has special needs, the task is even more difficult.

The transition to a single parent household won’t be easy. There will be feelings of anger, doubt, fear, frustration, and even betrayal. After all, the two of you took vows to work things out.

But sometimes things don’t work out

It’s important that you know it’s not your fault. And your child’s disability isn’t to blame either. As Iyanla Vanzant says, it’s time to do the work to get your lives on track.

Going through a divorce is like going to war. You don’t want to show up for battle without your protective gear. Don’t confuse this post for a lesson to destroy your soon to be ex, instead, treat this as a blueprint to prepare you for the tough days ahead.

Divorce Action Plan

How much child support should you ask for? What if your child requires special care beyond the age of eighteen? Am I doing the right thing?

These are legitimate questions and at the same time, they don’t even scratch the surface of what’s involved in a special needs divorce case.

Here are some suggestions of what to do when preparing for divorce.

Special Needs Divorce Checklist

  • Find a divorce mediator
  • Find a special needs attorney or an attorney who specializes in family law
  • Bring your child’s records
  • Prepare an after divorce budget
  • Custody arrangements
  • Living arrangements
  • After the divorce

Mediator

In the heat of the moment you might want to run straight to an attorney, but first, try a mediator. A mediator can help you arrange an acceptable divorce agreement. A mediator should be experienced and willing to let an attorney sit in without any hassle.

Your mediator should remain neutral and help keep the peace. Mediators aren’t free but some will offer a free consultation. Check Yelp reviews or get a recommendation from a friend who’s been through a divorce.

Special needs attorney

Next, you want to find a divorce attorney who specializes in this area. Custody, insurance, medical and counseling appointments are areas that must be addressed as soon as possible. Efforts to continue your child’s care takes priority over who gets the house.

The goal is to prevent dumping the burden on one person. Lack of support probably plays a huge role in breakups. To make sure you don’t get overwhelmed after the divorce, address this issue first.

Records

If you haven’t already been doing it, document everything about your child including the relationship with the other parent. Family court is also known as the mother’s court, but fathers have rights too.

You want to record all interactions, including the not so good days. Again, this is not to make the other person look bad, but this is to show the court what the child needs. Documentation is especially helpful in abuse cases.

Budget

Your income will definitely change. Income for divorced women is a not so surprising fifty percent. Another ugly statistic shows men tend to get richer after divorce.

Either way, you must prepare your after our divorce budget now. You need to figure out what your expenses will be if you’re going to have any kind of future.

Some things to consider are:

Can you afford to keep the house once the divorce is final?

How much money will I have to make in case I don’t get the child support I need?

What services can my child do without if I need to make ends meet?

Custody and Visitation

Other than the divorce itself, this is the most painful process. What happens to the kids? In Texas and Tennessee, one parent gets custody and the other gets visitation.

If you’re lucky, the two of you can agree to co-parent. Sometimes this is just isn’t case. Worst-case scenario one parent ends up abandoned despite a court order for regular visits.

Understand the court will decide what’s in the best interest of the child. Mothers tend to have more rights than dads, but if you find yourself on the wrong side of the decision be prepared to fight. If you know in your heart you’re the better parent, don’t give up.

Living Arrangements

Once you have decided who and where please make sure the place is suitable for your child’s needs. New divorcees are plagued with the task of finding somewhere affordable, but it has to be right.

New homes should reasonably accommodate the child. If your child has physical limitations, the other parent should move to a place that is handicap accessible. You should also know if the neighborhood is child-friendly.

Another thing you want to consider is to make sure in your divorce decree that you have permission to move. For example, if there is a doctor or facility two hours away that would be beneficial for your child and you wanted to move closer, your ex could stop you if it isn’t in the paperwork.

You want to put that card on the table because as Dr. Phil said, the person you married is different from the person you divorce. For your child’s sake be prepared.

When It’s Over

The ink is dry. Maybe it was an amicable split. A new chapter for you and your child begins.

Ideally, it would be great if you could seek counseling during this trying time. Most people I know don’t seek counseling until years later. Don’t wait years, get help as soon as it’s over.

Don’t be under the impression that life is going to be grand because the pain is in the past. The pain doesn’t heal until you deal with it. It didn’t work out and you’re left to pick up the pieces.

But Guess What?

You got this. Your child is going to need you more than ever. Despite your child’s emotional and/or physical challenges, they are resilient.

And so are you. Thomas Edison failed over two-thousand times when he tried to invent the light bulb. When asked, he said he didn’t fail, he found over two thousand ways it wouldn’t work.

You will get through this. I have faith in you as a parent.

Comments

What’s your story? Are you going through a divorce and have special needs children? Leave a comment below.

bonnie@adhdhomeschooled.com

ADHDhomeschool@Pinterest

ADHDhomeschooled @Facebook

wraemeredithblogs.wordpress.com

Song Lyric Saturday with Britney Spears

I’m a kid of the 90s.

Don’t ask me to pick between Britney, Christina or Pink. It’s not happening. I love all three for different reasons.

I said what I said.

Once again, I had a hard time picking a favorite song because who likes Britney and only has one favorite song? My picks are “Toxic” and “Circus”.

From “Toxic”:

” A guy like you should wear a warning”

I’ve met a few guys that should be required to have warning labels. I absolutely loved the video to the song. This was back when I actually watched music videos on a daily basis.

From “Circus”:

” I’m a put on a show kinda girl”

This song was complete fire. Britney is known for her dancing skills and has pretty much never slowed down.

Britney had a huge meltdown in 2007 and many of us felt awful for her. I sure did. I’m glad she got the help she needed. Her dad was her conservator for a while, meaning he was basically in charge of everything in her life, but I hear that’s been dropped. I follow her Instagram- she’s a talented painter. Who knew? It’s good to see her living her best life, singing, dancing, hanging out with her boyfriend and kids.

Live ya life, Britney! You deserve it!

What’s your favorite Britney song?

Should You Emphasize Grades or Mental Health?

Teenagers have interesting lives- fun times with friends, jobs (sometimes, depending on their age and other factors), babysitting, learning life skills, applying for college and let’s not forget a big thing: school.

School is a big factor in a teen’s life. They spend most of their days there, 6 hours minimum. Most teens enjoy at least part of the day but… some kids find school stressful from beginning to end.

The Anxiety Builds

I’m not talking about bullies or learning disabilities in this post. Those have been discussed. Some teens have severe anxiety about their grades. This can be from internal factors- the drive to succeed because they want to reach certain goals, like getting into a certain college or get a scholarship. Some pressure, however, comes from outside sources- as in parents, coaches, etc. When a teen feels that need to please others and doesn’t do as well as expected, it can lead to negative feelings of shame, sadness, and anger, among other feelings. The anxiety also builds.

Depending on the teen’s personality, they may give up on themselves or they may push themselves harder. Each child is different. Either option can lead to painful consequences if not carefully watched. These can include angry outbursts, depression, drug/substance abuse, eating disorders, and other issues.

Which is More Important?

Both are equally important. It is important for teens to get good grades, of course. This helps in many ways, one of the biggest being college admissions.

Is it worth sacrificing a teen’s happiness? No. Teens need the time to just be a kid. They need the time to sit around, watch movies, play with makeup, video games and all those other typical things. Those things create memories for them to look back on. It’s possible to be the valedictorian and still have a life, but it’s sometimes at a cost.

How can I help if I notice my child is struggling?

– Encourage your teen to find positive ways to blow off stress. Walking, jogging or other sports can help, but be careful to not over schedule. That can create other problems.

– Encourage creativity. Maybe your child is into an instrument or pottery? This can be fun and possibly something you can do together.

-If your teen is into the idea, try meditation or yoga. It may sound “weird” at first (my sons were not receptive at all) but it’s worth a try. Both are equally relaxing.

-Remind your teen that you love them and they don’t have to have straight As for that love to be there. Not every teen is a straight A student. The rule at my house is that they have to try their hardest. Failing, however, is not acceptable.

Lily has severe anxiety and I refuse to put extreme pressure on her to make perfect grades. That would just compound the anxiety. Update on the testing mentioned in Special Needs Round Two :she is not on the spectrum.

The boys work hard and make good grades. That’s all I ask for. I’d rather have them be happy with okay grades than super great grades and super unhappy. I’d feel like a horrible mom.

What are your thoughts?

Sources:

Rebel Circus

The Hearty Soul

All pics from Unsplash

Spotlight: American Federation for Suicide Prevention

This month’s spotlight is on the American Federation for Suicide Prevention (AFSP). I chose this in Jake’s memory. I became involved with the Out of the Darkness Community walks while working at the large mental health facility that we worked at together by participating in a walk with our co-workers after losing a fellow nurse to suicide in 2011. I’ve walked almost every year since.

In 2015, I helped start a team in Jake’s memory, but his oldest brother, Josh, now runs it. Josh does a great job and has raised a lot of money for Team Jake and Jared. (Jared is their brother, who died in 2002.) I continue to participate at community walks and have also participated in the University of Louisville Campus Walk. I started volunteering last year (if you have been to my About me page, the picture on that page is me at the 2017 Community Walk) and I am currently on the Logistics committee for this year’s walk in Louisville. You can read about this more in Back to Walking

**All information comes from AFSP **


The mission of AFSP is to
save lives and bring hope to those affected by suicide. That’s a lot to say in one sentence, but there is a lot of work involved. This organization does tons of research, sends volunteers to Washington, D.C. to speak for change in laws, ask for funding to do more research and other helpful things to help those that need it, provide programs for teens and up, and much more. There are services for loss survivors online and in person. These things can be found all over the website.

There are chapters in all 50 states and can be found on Facebook, Twitter, Instagram and YouTube.

AFSP was created in 1987 by a small group of people who wanted to support suicide research and education and sustain it into the future. These founding families, sadly, had lost a loved one to suicide. They joined with scientists (the researchers) to form the AFSP.

HOW CAN I GET INVOLVED?

There is a “Take Action” section on the homepage that you can click to find ways to get involved- volunteering, getting trained on educating others, sign up for an Out of the Darkness walk. There are walks all over the country.

WHAT IF I NEED SUPPORT?

There is a section “Find Support” section on the homepage. This is where you can find support if you are a loss survivor. I call this the club I never wanted to be in. In addition to Jake, I have lost an uncle and a handful of other friends. Losing someone to suicide is never easy. There are also sections for:

  • if you know someone who may be at risk

  • if you have attempted

  • if you are having thoughts of suicide

  • if your loved one has attempted

I WANT TO LEARN MORE ABOUT SUICIDE.

There are many factors to why people choose to attempt/complete suicide. This section gives some educational facts about suicide.

  • warning signs/risk factors

  • statistics

  • treatment

Suicide is a very difficult topic. It breaks hearts and shatters lives. This spotlight, hopefully, will help someone think again or spread knowledge. If you are having suicidal thoughts, please get to the nearest ER or call 911.

All pictures from Unsplash