Adaptive Parenting

Flexibility, understanding, pushing, pressure, grace, growth… all these words have been floating around in my mind the last couple of days. I was giving one kiddo a math test. It was a fairly simple test for him, reviewing concepts he has been familiar with for a couple of years just packaged in a different format. He excels at math, it just makes sense to him. But on this day about half way through the test, he started melting down. He was trying. He was putting in effort. He wasn’t quitting. But mentally and emotionally he was really struggling.

I went through a mental battle…we all have bad days and having a bad day on a test day is just how it goes sometimes, you don’t do well and that’s the grade you have to live with. On the other hand, it seemed to me that something was off, more than just a bad day. So, do I give him a break and have him continue later? Or do I push him through the whole test now?

 These mental battles we wage in our minds. When to push, when to let up, when to discipline, when to give grace, when to force them into change and when to adapt the environment around them to accommodate them. There is a time that each of these is the right thing, and there are times when each of these could be the wrong thing. Different kids and different stages of development require differing amounts of pressure to grow and do new or challenging things.

 As I look at God the Father’s example of parenting, this is what I see: He is love. He gives grace. He is patient. He is a God of second, third, and fourth chances. He forgives. He redeems. He also disciplines because He loves us and calls us to be like Him.

 Sometimes He asks really hard things of His children like Jesus and the cross or Joseph who was sold as a slave, falsely accused, put in jail, and then became a ruler. He also realizes when we just need a break like Elijah who after defeating the prophets of Baal and escaping Jezebel is burned out and feels alone and God sends an angel to care for him and tells him to sleep and eat. He parents each person individually according to their needs and through all of it he never abandons them. He is always with them providing support; love; direction; help; provision; and, greatest of all, salvation and an eternal hope.

 Sometimes being a parent means pushing our kids to do things that are hard. But it also means that we do all we can to prepare them, to provide coping mechanisms, to teach them how to navigate new places and situations, to provide a safety net that they know they can come back to us for help, that we are cheering them on wanting them to succeed, loving them whether they succeed or not.

What did I do with the math test? I told my dear son that I was proud of him because he was working hard and not giving up even when he was frustrated, and for his self-control and not getting overly angry or blowing up. I told him I could see he was struggling and I thought it was time to put it away for today, we’d finish the test tomorrow.

Written by Sarah McGuire Co-Founder of Hope Anew

When Life Is Too Much

The alarm rang and I finally turned it off. I had already hit snooze, twice. Then I rolled over and pulled the covers over my head again to disappear into blissful oblivion. This seemed to be a pattern lately. It was not even because I was exhausted – and I was exhausted. It was because I dreaded the day before me. Did I love my kids? YES! With all my heart. I would have done anything for them…except maybe get out of bed that morning, but we’ll ignore that for now. I just couldn’t deal with it, with them and their issues and all the pressures right then. So, if I just rolled over and went back to sleep, maybe they would just disappear or wait for a few hours? I was groggy and half asleep and was not really functioning in reality yet, so this just might be possible, right?

 “I didn’t sign up for this.” “It’s too much.” “I have a sense of dread at returning home at the end of the work day.” Are all phrases I’ve heard expressed by parents. This special needs parenting stuff can be hard – really hard. It is unrelenting. The pressures are there and they will continue to be there, probably for our whole lives. Aren’t I just the harbinger of good news and joy to you today, sorry. But this is nothing you didn’t already know (insert big compassionate sigh here). So, what do we do and how do we manage so that “I didn’t sign up for this” doesn’t become “I’m out of here – for good” or we don’t just pull the covers over our heads never to get up and deal with our lives that day and the next and the next?

 Obviously, practical matters like getting a break and resting is a critical physical need that must be met and is the first priority if you aren’t getting that, hopefully before you completely burnout. But, if you’re regularly getting your eight hours of shut eye and are still pulling the covers over your head or taking the scenic route home from work every day, then we need to share our cares, concerns and burdens with someone else. This can be tough. I know it’s not easy to share the most vulnerable, weakest parts of ourselves with another person. But, it can be so helpful.  It’s important to let the pain, doubts and fears out, get some reflection and perspective from other people, whether that’s a friend, counselor or both. But, it’s also important to choose those people wisely so that you get wise reflections and helpful encouragement and advice.

 Even Jesus who was, well, perfect asked for support from others in his darkest hour. Matthew 26:36-46 gives us the account. He goes to an olive grove to pray and takes his three closest friends, Peter, James, and John, to be near him and pray too. He was “anguished and distressed”. Can you relate to those emotions? Jesus is there to talk to his Father. He asks his friends to talk to the Father as well, but every one of the three times he returns to his friends, they are asleep. Jesus’ friends were not the best support to him that evening.

Even if you have great friends who are very supportive, I’m sure there are times when they aren’t available or when their advice or response misses the mark. Know that God the Father is always there. Always available. Never too busy. Never asleep. Never otherwise occupied.

 In a sermon I recently heard, I loved a quote the pastor shared from Paul Tripp, “When we are God-forgetful, we tend to load burdens on our shoulders we cannot bear.” So when the load seems too much to bear, remember to take it to Him.

You weren’t designed to carry the load alone.

Written by Sarah McGuire Co-Founder of Hope Anew

Building Your Home & Your Marriage

At a bridal shower, I once heard the story of a young newlywed couple who were working intentionally on their marriage and good communication and loving each other well. They made the arrangement that they would greet each other at the door every day when the husband arrived home from work. If he had had a particularly challenging day at work, was not in a good mood and needed some extra space, understanding and TLC he would turn his hat (that he always wore) backwards. That way the wife knew to give him some extra grace, care and to take on more of the evening household duties. And vice versa, if the wife had had a particularly stressful day and needed extra measures of understanding, grace and TLC she would pin her apron up. This way the husband could take over making dinner, make an extra effort to listen and whatever else was needed. This was a great arrangement until the day when the husband arrived home with his hat backwards and met his wife at the door with her apron pinned up.

I don’t know about you, but when special needs entered our worlds, every day my apron would have been pinned up had we had this arrangement. Of course, no apron was needed…I wasn’t at the door to greet him. Dinner was not yet in the works, or if it was, it had only gotten as far as some chopped veggies on the counter with no further plan. Crying (our son’s) often could have been heard before he ever arrived at the front door or at least as soon as he opened it. Welcome home, Dear. If his hat was backwards, I wouldn’t have noticed.

These men of ours. These special needs dads. They are a special lot. They keep showing up. As men, they have the desire to fix it and make it better, but they can’t. Not for the child, not for their wife, not for the other kids.

Some dads (and moms) don’t stick it out. They say, “I didn’t sign up for this” and they are gone. If that’s your family’s story, I’m sorry. I’m sorry for your pain, loss and that you are alone to handle all the pressures now.

If your husband is faithfully showing up, I encourage you to take a minute or two to express your appreciation for who he is and all he does. It can be spoken or written. If you write it, he may tuck it away to read repeatedly, especially during times when he needs a reminder that he is valued. It doesn’t have to be ornate or long. If you have time and energy for a long letter, wonderful. But, short and sweet, even one line, can work just as well.

If you need some ideas to get you going, I suggest using one of these:

• “I’m so proud to be your wife because… (of your integrity, hard work, perseverance, courage, fortitude, thoughtfulness, humor, etc)”
•  “I respect you because…”
•  “Our family is so fortunate to have you because…”

Proverbs 14:1 says, “A wise woman builds her home, but a foolish woman tears it down with her own hands.” I’ve seen women who criticize, put their husbands down or tell him what he is currently doing or providing isn’t enough. These women are tearing down their homes with their own hands. I’ve also seen women who build their husbands up speaking into their souls words that encourage and empower.

What can you do today to help build your home and your husband?

Written by Sarah McGuire Co-Founder of Hope Anew

PURPOSE IN THE PAIN

Do you enjoy pain? You may be thinking, what kind of ridiculous question is that? Who enjoys pain? You wouldn’t be alone in thinking that. If you go to the pharmacy or grocery store, the shelves are lined pain killers. Each of us probably has our own favorite. We live in a society that likes to go through life numbing pain.

I know I don’t personally enjoy pain and one of the most difficult things can be learning to walk through the pain. That pain can come in many forms…a physical illness, seeing a loved one struggle, the death of someone that is close to us, failures and mistakes, or…seeing our child struggle with special needs.

I recently heard the following quote by Erwin McManus, “Your pain is not the boundary for your limitation. Your pain is the boundary for your greatness.” When hearing this quote, it would be easy to think, “This guy must have had a pretty easy life.” The reality is that he said this after a life threatening battle with cancer.

The next instinct is to dismiss what Erwin said by saying, “This can’t be true because if it were I wouldn’t be struggling to get through the day. I wouldn’t be living in survival mode. I would be able to make an impact in the community around me.” The problem isn’t the quote. The problem is how we define greatness.

As I look back over our journey with special needs, I look at the person I was at the beginning and the person that I am now and I am a different person. I have grown in my ability to love. I have become more understanding. I have become a better father, a better husband. I am becoming more like Christ. I have a long way to go but I am growing. Becoming more like Christ is the greatest thing we can accomplish with our lives.

Somewhere along the way, many of us began to believe that if we followed Christ, obeyed God’s Word, and went to church that we would have good lives and then we were thrown into a spiritual tailspin when our children had the struggles that they have had.

God doesn’t promise to take away our pain but He does promise to be there with us through the pain.

Are you the parent of a child with additional needs? It can be easy to get caught up in the lows, the struggles, and the pain. I’m going to ask you to do something very difficult. I’m going to ask you to look beyond the pain and reflect on how you have grown as a person. If you are a follower of Christ, how have you become more like Him? How has your pain become the boundary for your greatness?

I Need A Grandparent

“What do you need?” This was the question our pastor asked just before going on the stage. To which Sarah broke down in tears and replied, “I need a grandma!” It really didn’t have to be a blood related grandma, any grandma would do. We were living over a thousand miles from family and she just needed someone who could come alongside her and hold our son. She needed someone who could give her a break.

Grandmas and Grandpas, I know this can be a challenging time in your life. This is a time of transition in your life and in some instances you may feel undervalued and like you are no longer able to make a difference. Let me tell you, there is a family out there just like ours, a family impacted by special needs, who would love to have you come alongside them. You might be the only source of encouragement those parents have that week. Your help might allow the mom to get a much needed break and keep her from succumbing to emotional and physical exhaustion.

When you first reach out to the mom of a child impacted by special needs, she will likely leap with joy when you first offer to provide her with a break but then you will see the excitement leave her face as she immediately thinks that she won’t be able to teach you everything it will take for you to watch her child. Acknowledge this and let her know that you are willing to learn, even if it takes a few visits of just being there with her and learning so you both are comfortable with what it takes to care for the child.

Here are some tips to help you get started:

• Be teachable. Take notes if you need to. Ask about how the parent would respond in certain situations (parenting a child with special needs often looks different than how you may have responded with your children).
• Take the initiative to set up a time to get started with learning. The parent probably won’t want to impose on you by asking you to come over. If things seem like they will work out and you will be able to care for the child, set up a regular time so the parent can know that they will get a break. Also, don’t feel obligated to be there all the time.
• Be flexible. Doctor appointments can change and sometimes the child can have challenging days where you might not be able to care for him or her.
• Be understanding. Don’t give the parent platitudes to try and encourage them. For example, “Your child seems just fine to me” or “God will never give you more than you can handle.”

It has been nine years since Sarah broke down in tears and cried, “I just need a Grandma.” Now, we live next door to one set of grandparents and only 3 hours away from the other set. This summer, when our oldest son went to camp with his friends, our youngest son went to “Grandma Camp.” He spent an entire week with his grandparents and had a blast! I have to say, it was pretty wonderful for his mom and I as well.

Are you in that grandparent phase of life and wondering how you can make an impact in the world around you? If you are involved in a local church, ask the pastor if there is a family impacted by special needs who could use a “Grandma” or “Grandpa”.  

I Walk By Faith And Not By Sight

“I walk by faith and not by sight” 2 Corinthians 5:7. These words are painted on a board that sits atop my kitchen cabinets. It became my theme verse for many years. You might think it was because my faith was so strong and unshakeable that this was my mantra. After all, I had dedicated my life to serving God. I’d given up career options that could have been very lucrative, I’d gone to Bible school instead and become a missionary. But, you would be completely wrong. The opposite was in fact the truth.

My faith was so badly shaken that this verse served as a guiding light to me in my world which had shrunken to the size of my house, the screams and pain of my child and the darkness that seemed to enfold me in hopelessness.

I felt lost, adrift and like nothing made sense any more. When nothing made sense, including God, and darkness surrounded me, I would repeat this verse, “I walk by faith, not by sight.” It assured me that in my darkness and not being able to understand anything, especially God, that IS where faith begins.

Hebrews 11 is the great chapter that spotlights heroes of faith. You’re probably familiar with it. I memorized the first several verses in fourth grade. They are wonderful and encouraging and give us examples to look to of people living out their faith in God with victorious results. But it wasn’t until I was a parent of a child with special needs and life was desperate that I really took note of verses 35b-39 that starts with, “But others…” These “others” lived with just as much faith as those in the first 34 verses but their experiences in life turned out a bit differently “…were tortured…jeered at…cut open with whips…chained in prisons…died by stoning…sawed in half…killed with the sword…destitute and oppressed and mistreated. They were too good for this world, wandering over deserts and mountains, hiding in caves and holes in the ground. All these people earned a good reputation because of their faith, yet none of them received all that God had promised. For God had something better in mind for us.” And if you jump back to v.35, “They placed their hope in a better life after the resurrection.”

Is God able to conquer armies, close lions mouths, raise the dead, create dry ground where a river had been moments before? Heal our child? Pay for the therapy we can’t afford? Provide a great therapist or school? Yes He IS able. Will He? For some of us, yes. For some of us, no. Do I know why or understand? No. And until the resurrection, I won’t. His thoughts are nothing like my thoughts and are far beyond anything I can imagine (Isa 55:8) But I do know that He has a plan and whether His answer is yes or no, He sees me and He sees you. And until the day when we can see, we can walk by faith and not by sight.

Written by Sarah McGuire, Co-Founder of Hope Anew

TANTRUM VS MELTDOWN

“If that child were mine it wouldn’t be acting that way right now.” How many of you have heard this or a version of this while your child was in meltdown? It may have been at the grocery store. It may have been at a family reunion or any number of other places.

The problem is that many people don’t understand the difference between a meltdown and a tantrum. As a kid, I remember seeing an example of a tantrum on the old Andy Griffith TV show. Opie wanted to receive his allowance without doing any work and his friend gave him clear instructions on how to throw a tantrum to get his own way. Opie started by holding his breath. This escalated to crying like a baby, which progressed to stomping his feet and finalized with him lying on the floor kicking and yelling. Every parent has seen a version of this in their own home and most kids don’t need a friend to teach them how to do it. They figure it out on their own.

Tantrums are clearly a discipline issue. They are an act of will. The child is trying to manipulate the situation to get his or her own way. This is what the average person thinks is going on when they see a child having a meltdown.

So what is the difference?

A tantrum is typically a tool in the child’s toolbox to get their own way. The child is typically in control when the tantrum starts and knows what they are doing. Tantrums are a behavioral issue and the child needs discipline to learn that behavior isn’t appropriate.

On the other hand, a meltdown is typically a response beyond the control of the child. It is often a response to an environment or a situation. It may be as simple as their milk being spilt on the kitchen table. They might be in complete sensory overload at the mall or they may just be overwhelmed and exhausted. In the case of a meltdown, disciplining the child won’t resolve it and will likely make it worse.

In all honesty, sometimes even as the parent I have a difficult time telling the difference. I can be so close to the situation that I don’t see it. There have been times when I have had to ask Sarah if she thought a certain reaction our son was having was due to his struggles or if it was in fact a behavioral issue. There have also been times when what started out as a behavioral issue had transitioned to a meltdown so I learned to first help him get through the meltdown and then later circle back to the behavioral issue.

I want to close by saying, “Hang in there Mom and Dad.” There is a lot of judging each other in the world around us. You may catch the whisper of the occasional snide remark, causing you to second guess yourself and your ability to parent this wonderful child of yours. The reality is the person that was judging you 30 seconds ago has probably forgotten the experience and is currently judging someone else. Don’t let their negativity breed negativity in you. You’ve got this.

Unique Challenges Of Marriage: My Spouse Is Overreacting

“My wife thinks our son has autism.” It was morning and I was sitting in the office of a colleague of mine. He had just asked how I was doing and that was my reply. There was a disassociation there, as I didn’t want to believe it yet.

It took me longer to accept the diagnosis than what it did for Sarah. For Sarah, the diagnosis was a relief because it gave direction and helped her better understand what was going on. She had been caring for our son all day and all night, day in and day out. She was searching for answers when no one else could give us any.

I was away at work all day and not home until late evening. I didn’t see the day in and day out as much. For me, the diagnosis communicated a weight, a finality, the beginning of the end of a dream. I didn’t want the diagnosis to be true so I denied it.

You may find yourself identifying with where I was. You may be smack dab in the middle of denial and think that your spouse is way out in left field with whatever diagnosis your child is facing. You may think your spouse is overreacting to whatever is going on. If you are in this camp, it can be easy to become irritable whenever the diagnosis or other health struggles are mentioned. It can be easy to be upset and even grow bitter at your spouse.

If this is where you find yourself and some of the above thoughts resonate with you, remember it is time to love well. Notice, I didn’t say to just humor your spouse but love them. Here are some ways that you can do that:

• Engage with them. Don’t just burry yourself in your work to avoid the problem. They are likely lonely and need you.
•  Listen to them. Set down the phone. Turn off the TV. Make eye contact and really listen.
• When they bring research and information to you, study it.
• Whenever you have a chance, go with them to the doctor appointments. Don’t be afraid to ask the doctor questions.
• Trust them. I don’t know you but more than likely, if you are in this spot, your spouse is the primary caregiver and is with the child a greater portion of the day. Trust them and trust their instincts.

After a time, I accepted what was going on and became that much more engaged. While I went on to go through the other aspects of chronic grief, I came to a point of being able to dream a different dream for our son and Sarah and I became a stronger team.

How you demonstrate love to your spouse during this time is so crucial. This time can have the effect of tearing apart a marriage or strengthening it. How you show love to each other will make all the difference.

How can you best show love to your spouse right now?

P.S. If you feel like your spouse is in denial, don’t just print this article off and leave it waiting for them somewhere! That probably won’t be received the most favorably.

Unique Challenges of Marriage: My Spouse Is In Denial

We were sitting down in a small diner with some friends. They were sharing with us about their journey in special needs and how they were doing. As they were sharing, the husband began talking about the future and how he dreaded how quickly their daughter was approaching legal driving age. His wife just stopped and looked at him and replied that their daughter would never be able to drive due to the how her special needs impacted her. Her husband listened, but you could see he was not ready to accept it.

Denial, anger, bargaining, hopelessness, acceptance are the 5 most associated aspects of grief. We are all familiar with them but that doesn’t make it easy to experience. It is easy to assume that you will be in the same spot as your spouse but that isn’t always true.

Initially, it can be so hard being in different places in the grieving process, especially when one spouse is stuck in denial. The one person who has been there with you through the entire journey is not in the same spot and may even be at odds with you, putting up barriers to different treatments or therapies. This can lead to increased feelings of isolation and loneliness. It can create a fear for your marriage as you feel like you are in a spot of having to choose between the health of your child and your spouse.

What can you do?

• Love and respect your spouse well. Recognize that they are likely going through their own internal battle. Listen to them and check in with where they are at emotionally. Keep bringing information to them. Not in a nagging way but in a factual way. Share what the doctors are saying and what the therapists are saying. Be real with them about what your day looks like and don’t gloss over what the struggles were (don’t exaggerate them either).
• Connect with others who get it and have been there. I don’t mean a group that just gripes about how un-understanding their spouses are but a group that will encourage each other. This might be a support group, a Facebook group or some other online group.

It is a hard and lonely spot to be in. Eventually, the denial will pass and you both will find yourself in a much better place.  The different rates at which you experience the various aspects of chronic grief will become a strength as it will allow you to better support and encourage each other.

Are you the parent of a child with additional needs? What aspects of chronic grief do you relate with most right now? Denial, Anger, Bargaining, Hopelessness, or Acceptance

If married, where would you say your spouse is with these different aspects of chronic grief?

Would your spouse say that you are living in denial regarding your child’s needs? Stay tuned for part two: “Unique Challenges in Marriage: My Spouse is Overreacting” next week.

"No, I'm good."

Do you ever feel like you are just running from one thing to the next? Running from one meeting to the next, from one sports practice to the next. Running from counseling appointments to therapy sessions to school IEP meetings and the list goes on and on.

This week I was preparing to go to a meeting and was talking to our youngest son. As we were talking, I jokingly asked him if he would like to go to the meeting instead of me. He quickly replied, “No, I’m good,” laughed and walked away without any remorse and as happy as can be. Obviously, I didn’t really want him to take my place in the meeting but I can’t help but think there is so much I can learn from his response.

It can be hard to say “No.” I often have opportunities come across my plate. Some that I need to be at but others that I don’t really need to be at. I often have a twinge of guilt when I turn down an opportunity, especially if it is an opportunity that will help someone else.

In the last year I heard someone say, “Every time you say ‘yes’ to one thing, you are choosing to say ‘no’ to something else.” This really helped me to put things in perspective. It is easy for me to live life and commit to opportunities like I have an endless amount of time and energy.

When I live this way, I find myself completely exhausted, having a minimal amount of quality time with my family and generally not having the bandwidth to focus on the areas that are most important to me.

There will always be things that I have to do. The therapy appointments and things like that that generally have to be done but for everything else, I have begun running it through a filter. I look at how it will impact Sarah’s and my goals for our family and I look at how it will impact our goals with Hope Anew. If it doesn’t align with these goals, then it doesn’t get added to my list. I’m still working on not feeling guilty when I say “No” but it is amazing how much more present I can be for the things that do make it through the filter process!

We talk a lot about “self-care” on this site. Sometimes self-care doesn’t mean doing something to take care of ourselves. Sometimes it means not doing something.

Are you the parent of a child impacted by special needs? What is on your list that can be taken off? What filters can you put in place to determine if an opportunity is something you should or want to be a part of? There will always be opportunities and things to do but there is only one you.

Next time you are presented with an opportunity that doesn’t make it through your filters, feel free to follow the example of my youngest son and say, “No, I’m good.” Walk away without feeling guilty and know that you are doing the right thing for your health and your family.

WHEN THE PAIN IS TOO GREAT

On June 20, 2017 the Grand Rapids News published an article with a title reading, “‘Saw his son suffer too much, too long,’ friend says of principle in murder-suicide.” This article shared a friends perspective of George Heckman, an elementary school principle, who took his son’s life and his own life.

George’s 28 year old son Grant had cerebral palsy, was non-verbal and confined to a wheel chair. If you were a friend of George’s, you would think that he had it together. George was described as being able to make others laugh. He would volunteer and help other families, and he served on the board of an organization that came alongside those who are disabled. If there was poster of a parent who appeared to be doing well and to be thriving, George’s picture would have been on it.

Unfortunately, George’s story is not unique and has been repeated with other parents of children impacted by special needs around the country. In Michigan alone, over the last five years there have been at least 3 attempted murder-suicides of parents and their child who has additional needs.

There may be some days that you feel like George. You may feel like when others see you, they see a person who has it all together. While inside, you are just struggling to make it and it is killing you to see all the extra pain and hardship your child has to endure.

As parents of children with special needs, it is not uncommon to deal with chronic grief. Many have mastered the art of wearing a mask, because we think, “Nobody wants to hear about our pain again. The same struggles, the same pain we’ve been dealing with for the last five, ten, twenty years.”

The pain, hurt and anger can only be buried so long. In time they will reappear in one way or another. It may not be as extreme as George Heckman’s case but it will reappear, unless you address it.

Addressing the pain, doesn’t mean the pain will go away. It might but not necessarily and this doesn’t make you a weaker person. You will have good days and you will have days you really struggle. On those days you struggle, have one or two people that you can really be open and vulnerable with. Have those people you can take your mask off with without fear of how they will respond. It is amazing how much healing can take place when you can be real about your pain.

Do you have that person you can be real with? That person who isn’t scared when the mask comes off but respects and loves you more because of it?

If you read this article and find yourself feeling suicidal or homicidal, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or text with someone at the Crisis Text Line by texting HOME to 741741.

My Child Seems Developmentally Delayed, What Do I Do? Part 2

What do I do? How accurate is this? What does this mean? What can we do to help?

Last week I shared the first two of five principles that I have found to be true and helpful for parents  who find have just been given a diagnosis or who know something is not quite “normal” with their child and are in the process of testing or diagnosis. Parents who are struggling with the above questions. If you missed Part 1, you can read it here.

Today, let’s look at the last three of these principles.

3.     SELF-EDUCATE, RESEARCH, & PRAY. In today’s world there are a myriad of options, finding the best, or even a very good, one will require you to educate yourself and do some research. Of course, much prayer and asking the Lord for guidance, discernment and good options is critical!

4.     TRUST YOURSELF AS HIS/HER MOM. You know your child better than ANYONE. You may not be an expert on all things medical or psychological, but you are an expert on your child! Use the experts in medicine and psychology to help inform, guide, and treat your child, but if one path doesn’t seem to match your child or their needs, don’t be afraid to say no. Or if another path does fit, but you will get a lot of opposition from friends and family, pursue it anyway and be an advocate for your child. Hands down, YOU are his or her most important and often, only, advocate!

I do have one word of caution. As a parent, you can understand and feel deeply for your child in a way others won’t that can come with both pros and cons. The pro side is partly touched on in the previous paragraph. The con side is when a parent feels too much sympathy and enables the weaknesses of their child so that the child is not challenged to do hard things or pushed to the next level and therefore, the child’s progress and prognosis stops short of what the child is capable of, which ends up harming the child in the long run, instead of helping. So, beware of falling into that trap!

5.     THERE IS HOPE! While there is no easy fix, there is hope in the journey. God does have a purpose and a plan for you AND your child. I’ve seen my son and other kids with additional needs grow and develop far beyond where doctors, therapists, counselors, teachers and others ever predicted they could. Yet, even if they don’t, God is still there beside you every step of the way.

I love Sally Clarkson’s words on this subject, “I’ve written a lot…about the importance of accepting our different children just as they are, providing a place for them to be themselves, and appreciating God’s design for them. This is absolutely crucial – but it needs to be balanced with doing our best to help our children grow and move forward in their lives.”

Are you the parent of a child with additional needs? What helps you find this balance that Sally Clarkson mentions?

*List highly adapted from Different by Sally & Nathan Clarkson

About the author: Sarah is the Co-Founder of Hope Anew and has a background in counseling but the title she treasures the most is Mom of two boys. The youngest of whom has his own additional struggles.

My Child Seems Developmentally Delayed, What Do I Do? Part 1

What do I do? How accurate is this? What does this mean? What can we do to help?

As I talk to parents, especially moms, who have just been given a diagnosis or who know something is not quite normal with their child and are in the process of testing or diagnosis, these are the questions they come to me with most often. Their minds and hearts are in a jumble, so many questions, fears, and unknowns.

I remember being in that place and the confusion and consternation that swirled in my mind and soul. There are no simple answers. However, over the last decade, I’ve gotten to travel further along that journey and fight many a battle both within myself and to get the help my child has needed. While not all of those questions are answered even now, I’m much more settled – emotionally, intellectually, and spiritually.

No two children or situations are the same, so there’s never one right answer or process to follow. I have five principles of how to navigate this. Today, I’ll share the first two of the five principles that I’ve found to be true and helpful at this stage of getting help for our children.

1.     GET HELP! Do seek out help for your child. Don’t let fear, excuses, or denial (He just likes playing by himself. She just doesn’t show much emotion; that’s just who she is) delay you very long. Sometimes the sooner help is found, the more difference it makes in the long-term outcome for the child.

2.     GET ANOTHER OPINION. My son’s first pediatrician’s office told me he had Separation Anxiety. Umm…he was three weeks old and NOT separate from me. When one doctor, therapy or test doesn’t feel right to you or doesn’t help, try another one. I’m a firm believer that if Plan A doesn’t fit or work, there is a Plan B, C, D, E,…keep searching.

If you are a Mom or Dad in this situation, you may feel like you are carrying the weight of the world as you are dealing with so many unknowns and don’t know what to do. Next week, we will look at the remaining three principles that have been helpful for me personally, as well as for other parents I’ve talked with.

If you are a parent who has already walked this road, what was most helpful for you during this time?

*List highly adapted from Different by Sally & Nathan Clarkson

About the author: Sarah is the Co-Founder of Hope Anew and has a background in counseling but the title she treasures the most is Mom of two boys. The youngest of whom has his own additional struggles.

JUST KEEP SWIMMING

"Just keep swimming, just keep swimming." When many of us heard Dory say this in Finding Nemo, it became our life motto. As we work through the pressures of the day and are caring for the additional needs of our children, it can all seem overwhelming and we struggle to just take one more step.

This is partly why it drives so many of us crazy when we are told, "We could never do what you do." Most of us don't feel like we know what we are doing. We don't feel like we have extra parenting skills and we don't have this extra amount of insight or strength to care for our child's needs. We feel weak, exhausted and like we would rather do a back float than keep swimming.

I recently heard the following quote about parenting by Paul Tripp and it really resonated with me. "God knew our calling would be so huge and our weakness so deep that the only thing that would help us was Himself." Isaiah 40:28–29 speaks to this when it says, "Have you not heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of His understanding. He gives power to the weak and strength to the powerless."

This is so encouraging to me and hopefully will be to you. We can know that when our child is melting down in the grocery store, God is there. When we can't go to church because our child's immune system is too weak, God is there. When the doctor comes out to give us bad news, God is there. When we are too weak to ask Him for help, God is there.

It is okay to acknowledge our weakness. In fact, please do. You might encourage others in their walks. We can see the Apostle Paul do this in 2 Corinthians 12:9.  In previous verses, he shares how he had begged God to remove a "thorn in his flesh" three times. We don't know what this was but God tells him in verse nine, "My grace is all you need. My power works best in weakness." Paul goes on to say that he now boasts about his weakness so that the power of Christ can work through him. When we are weak, is when God's power is most evident in our lives and He will receive the most glory.

I want to close with this last thought by Paul Tripp, "God hasn't just sent you to do His work in the lives of your children; He will use the lives of your children to advance His work in you."

We want to hear from you! If you are the parent of a child with additional needs, how have you seen God's strength in your weakness during this journey?

It's Memorial Day Weekend!

It is Memorial Day Weekend! I love Memorial Day! It signifies the beginning of summer. It is time for grilling, home-made ice-cream, swimming, picnics and going to the park. It is time for baseball, boating and spending time outdoors. The grass is green. The birds are singing. The flowers are blooming. You will probably find me out in the garden planting tomorrow and on Sunday afternoon you will find the average Indiana household glued to the tv watching cars racing around a track in the Indianapolis 500.

I love Memorial Day Weekend. I’m thankful for those who have given their lives in service of our country, protecting our freedoms and liberties and what this means for children with additional needs.

There are many battles that still need to be fought so people of all races and disabilities experience the same freedoms and privileges but because of the sacrifice of those fighting to defend our country, these other areas of growth can still happen.

Amidst the growing pains, I’m encouraged by seeing society generally becoming more inclusive of our children with additional needs. I’m excited to see this starting to impact our churches as we have the beginnings of a movement starting within the church. In this movement, leaders are beginning to recognize that we are a body and that when aspects of the body are left out, our church cannot function as it should.

Why do I share this? Am I intending for this to be a political post or a post about church reform? No, I’m sharing this because I’m thankful and want to encourage you. It is sometimes difficult to see the forest through the trees. It is easy to get caught up in our daily struggles and not have perspective of progress that is being made.

This Memorial Day weekend, we have a lot to be thankful for. Next time you see a veteran or someone in active service, take time to thank them for their service to our country and for the sacrifice they have made.

Are you the parent of a child with additional needs? How does your family make Memorial Day special?

A PARENT'S GREATEST FEAR

I recently had someone message me and share some concerns they were having regarding their adult child who is in college. This person was really concerned about how the child’s struggles would impact completing college and their future ability to work. They closed by asking what I worry about for our son, Jordan, and if I had any concerns. At the heart of this question was, am I worried about my son’s future?

The short answer is, “Yes.” In the midst of being so excited and happy for the amazing progress he has made, it is easy for me to worry about my son’s future and wonder how his social/emotional struggles will impact it. It is easy for me to get caught up in the game of wondering. Wondering if he will be able to find a career he thrives at and enjoys? Wondering if he will get married? This wondering game can go on and on. If I don’t end it, I always come out the loser.

The future… How can two ambiguous words be so scary. These two words will strike fear in the heart of the most stout parent of a child with additional needs. I have had the opportunity to talk to many the parent who will refuse to even think about the future. Some parents offer a confident answer by sharing that one of the child’s siblings will take care of the child if something were to happen but many more just look back at me blankly because they don’t know.

The truth is none of us knows the future. I know what Jordan’s struggles are and am able to come alongside him and try to help him grow. He may always struggle with certain things but hopefully he will be more equipped to handle those struggles. That’s what we do. We take it day by day. We research and look for additional resources. We talk to other parents about what they are doing and we pray, because that is ultimately the only place where hope can be found.

We take comfort in Job 42:2, where Job acknowledges that no purpose of God can be thwarted. Why does this bring us comfort? It allows us to praise our heavenly Father because our son is fearfully and wonderfully made and when He knit Jordan together in his mother’s womb, He had a plan for him even at that time... That plan will not be thwarted. We look forward to that day spoken of in Revelation 21:4. That day when there will be no more pain, no more tears and our children will no longer have their additional struggles.

Are you the parent of a child with additional needs? We want to hear from you! What is your biggest fear about the future and what helps you overcome those fears?

WHAT IS YOUR BREAKING POINT?

It was the middle of the night and it was pitch black out. The heat was oppressive and all I could hear was the whir of the ceiling fan. I woke up and could barely suck in a shallow breath of air. My chest was constricted and I was having sharp chest pains. A sense of panic came over me. After time, my breathing returned to normal, the chest pain went away and the panicked feeling dissipated. This was my first panic attack of what would be many more to come.

This panic attack didn’t come out of the blue but it was a complete surprise. Without realizing it, I had been experiencing chronic stress. Chronic stress can be defined as the response to emotional pressure suffered over a period of time during which an individual perceives he or she has no control. I was a prime candidate for this.

Our youngest son with additional needs was now seven years old and these needs had placed a tremendous stress on our family. As a husband and dad, I internalized my struggles and what I was feeling because I didn’t want to place more weight on Sarah. On top of our son’s additional needs, during the previous year I had 5 surgeries and was on bedrest off and on for 10 months. The final straw was working with refugees in a refugee camp in South Sudan. My body had reached a point where something had to give. It could not just keep pushing forward. On my way home, lying under a mosquito net on a cot in Juba, South Sudan I experienced my first panic attack.

I have since gone on to get the help I needed. I have prioritized making sure I am getting the right nutrition and am taking breaks periodically. These things have allowed my body to recover to the point that I no longer experience panic attacks.

Often, we, as parents of children with additional needs, just keep pushing on. We just take one more step and focus on getting through that next minute. This becomes our new normal and before we know it, years have gone by…step by step and without a break.

Our bodies can only live under constant stress for so long. After time, something will give. Some of you may find yourself in this state of brokenness right now. Maybe you are struggling with depression or doubts about God. Maybe you find yourself dealing with one of the many health issues that can result from chronic stress. I want to encourage you.  This does not mean that you are a weak person. It does not mean that you are somehow “less than”. It simply means you are human.

God sees your brokenness. He knows your pain. He gets it like no one else can. When it feels like you are alone, He is with you. He will use your brokenness.

“Give all your worries and cares to God, for He cares about you.”

~ 1 Peter 5:7 (NLT)

Please...Don't encourage me!

One of the things I typically love at conferences is talking with people and getting to hear their stories. I recently had the opportunity to speak at a conference. After the final workshop that Sarah and I lead, an individual came up to talk with me. It was a memorable conversation. He introduced himself and went on to tell me that mourning the loss of the dreams we had for our child when we have a child impacted by special needs is a lie from Satan. After I picked my jaw up off the floor, I mentally went through the workshop we had just lead on “5 Beliefs That Make Hard Times Harder & How To Practically Come Alongside Families Impacted By Special Needs” and had to wonder where we miscommunicated so badly that this individual felt this was the best way to come alongside me. After a brief conversation, he walked away saying that “he was just trying to encourage me.”

What I am about to say may sound harsh but it needs to be said. Please do not come alongside someone who is struggling, admonish them and then try to wrap a pretty bow on it by saying that you are “just trying to encourage them.” I don’t need that kind of encouragement and neither does any other parent I know who has a child who is impacted by special needs.

Parents of children impacted by special needs will go through seasons like other parents. Ecclesiastes 3:1,4 tells us there is a season for every activity under the sun. There is a time to cry, a time to laugh, a time to grieve and a time to dance. As parents of children with additional needs, we may bounce between these seasons more frequently or even be in one season longer than another.  And you know what, it’s okay. It’s okay to grieve. It’s okay acknowledge the loss. In fact, it is actually a good thing.  We are not saying that we love the child any less. We are not denying the value of the child or that God has a plan and is using this. There will come a time when we will heal (not to say we won’t still grieve at times) and we will be able to dream a new dream for our child. But if today isn’t that day, that’s okay.

Do you really want to encourage families whose children have additional needs? Leave any judgment or condemnation at the door! Don’t feel the pressure to be a teacher or educator on this particular season of life we are in. Most parents of children with additional needs already have enough self-condemnation and guilt that they are dealing with. Instead, be their friend and love them where they are at. Love them in the midst of their emotions without trying to clean it up. Be a part of that healing process.

Are you the parent of a child with additional needs? We want to hear from you! What has been the most loving way you have been blessed by a friend, family member or complete stranger when you were really struggling?

A God Who Gets It

Do you ever feel so alone and like there just is not anyone who really gets it? It is impossible to explain to someone in passing the realities of what it took for you to be at that place at that moment.  Most people won’t be able to understand what goes into your average week or would not know what to really say when you tell them where you are really at emotionally or spiritually.  When you finally are able to sit down with your friends over a cup of coffee, you find it hard to really enter into the conversation because you are in such different places. You find your priorities are different and discussing vacation plans or home decorating ideas is taxing.

Finding those one or two people who you can really be open with and really share your heart with is so hard. This Easter season I have been reminded that while being a parent of a child impacted with special needs can be really lonely, we have a God who gets it.  He gets it like no one else really can.

Many of us memorized John 3:16 as a child. It says, "For this is how God loved the world: He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life." It is so easy to just read over that and think how nice it is that God provided a way that our sins can be forgiven and that we can once again have a relationship with Him.  When reading this verse, I have always thought about the cost to Jesus for our salvation and it wasn't until recently that I really stopped and thought about what it cost God the Father.

He knew what restoring our relationship with Him would cost His only son. The Father knew what Jesus would endure when He came to a sin cursed world. He knew that as Isaiah, prophesied in chapter 53, His son would be a "man of sorrows, acquainted with deepest grief" and despised and rejected. Our Heavenly Father heard Jesus' prayer in the Garden of Gethsemane when Jesus was praying so intensely for another option that He sweated drops of blood. He knew that His son would die on a cross after being whipped, mocked and having a crown of thorns placed on His head. This is how I know that He understands what we are going through.  He gets my pain when I see the additional struggles my son faces. He gets my joy when I celebrate the successes.

So this Easter season, while I am celebrating the resurrection of my Savior, I am also celebrating the fact that I am not alone. My Father gets it and I can pour out my heart to Him at any time.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

~ Psalm 91:1 (NLT)

5 Things Parents Of Children With Special Needs Want You To Know

Have you ever wondered what it would be like to sit down with the parent of a child with special needs and ask them what it is like? More than likely you would be greeted with a glazed stare, both from exhaustion and from determining if you are safe person to share with. 

They say that the best way to get to know a person is to walk a mile in their shoes.  This really hits home with special needs.  Many parents of children with additional needs have been hurt by well-meaning people who have never been in their shoes and it is difficult for them to really share where they are at with you.  However, if they open up, and I mean really open up, their answers will likely have the following five themes.

• It is really, really (can I add another really) lonely. When plans change, it is not because we are trying to avoid you.  We do value you and want to be with you but our kids are our priority.  We’re sorry we can’t make it to coffee, the guys night out, to the women’s retreat, to the ladies night, or to the family reunion.  Thank you for asking and please keep inviting us. That shows us that you still care.
• It is so hard and exhausting and will be hard for you to have a friendship with us.  We are a package deal with our kids.  It means that we are always in survival mode and never able to relax because something is bound to come up.  It is having to be hyper-vigilant, a strong advocate and on the ready.
• We are just like you. We are ordinary parents. We are not “Super Mom” or “Super Dad.” Please don’t try to encourage us by telling us that “God knew that you could handle a special needs child.” Some days we aren’t handling it very well at all.
• We often feel judged as parents.  We have to be creative and think out of the box.  We know you mean well but please don’t offer advice on how to parent.  As parents of children with additional needs, we have to do things differently.  Please respect our choices. Thank you for being understanding, having extra patience, and compassion.
• It is hard but it is amazing and I am a better person because of my child.  I love them and can’t imagine life without them.

Next time you are in a grocery store and see that mom sitting on the floor, while her child is melting down, let her know she is doing a good job.  When you see that friend with the autistic son, let them know you miss seeing them. Love them and when you are able, be there for them. 

We want to hear from you!  If you are the parent of a child with additional needs, what do you wish your friends and family knew?