Taking Some Big Steps through Diagnosis

Our baby had a hearing test end of March 2023. We learned he did have mild to moderate hearing loss in his left ear. We had follow ups after this  with mixed results and inconclusive outcomes. Finally it was determined that he did in fact need tubes before they could assess any further. Tubes were not able to get scheduled for at least 3 months out it was longer than they wanted us to wait with his speech being so delayed. We ended up with a call with an opening that very week from a cancelation! They were placed in the fall of 2023 and his hearing retested. He had normal hearing in both ears. Such a blessing.

We also had a speech evaluation completed in Spring of 2023. During the long process the doctor asked countless questions. She observed A in the room as he played and maneuvered toys. He played with the wheels on the cars and spun the gears around and around in silence. He continually grabbed my hand or her hand to "show" us something or to have us help. I explained his love for the alphabet and his alphabet puzzle he has at home. She got an alphabet puzzle out and he immediately began flapping his hands in his excited way. He was so happy to see the letters. He still did not speak much. As he did the puzzle carefully he pointed and moved each letter. He got to "O" (his favorite) and yelled "OH!" She was so surprised. She said, "You said that clearly!" I explained that he said many letters pretty clear (for a 2 year old). We discussed the words he was saying. We talked about the words and phrases I had heard once and then never again. It all added up to more and more anxiety in my mind. Where was this going? She asked if he turned his voice on to get my attention (even if not saying words). He does. She asked if he played quiet often alone. How he interacted with other children when he had play groups. Did he interact with others? Did he share toys or fight to keep toys?

She went to type her report. When she got back to us she announced that she was diagnosing him with Mixed Receptive-Expressive Language Disorder. She went over the next steps. My mind slowly became more numb. She did not think it was due to his hearing loss.

She also said "I cannot diagnose Autism, I do believe you need to get an evaluation done as soon as possible". She explained that it would help know how to best move forward with him and how his brain learns and processes. She also believed he was a Gestalt Language Processor and would learn best using phrases instead of words.

We were able to get Speech services started with a state funded program for toddlers. The therapist came to our home and worked with A for an hour 3 times a month giving me insight and tools to work with him on my own. It was a great program and helped me better assess how he was progressing.

We did end up getting the Autism and developmental screening done at the Children's Hospital and the wait is so long but it is such an important thing to be sure to have people who know exactly what they are doing so you can have accurate answers and clear pictures. We went through the process and in the Fall of 2023 A was diagnosed with Level 2 ASD. He shows signs of Hyperlexia and Gestalt Language processing.

Around the same time the therapy services we were using for his speech therapy started helping us transition him to the school system which he would start upon his 3rd birthday. We had the first meeting with them in November 2023. They did a sensory profile to see his sensory needs and he did have several needs we could work on helping with.

He turned 3 in February 2024 and began preschool in a special education classroom the next day. He gets speech therapy and occupational therapy during his school day. He loves getting to ride the bus home.

God has provided people in our path to give guidance and encouragement. He is growing and thriving so far and we are excited to see how he grows through school interactions and with the therapies they can do with him.

Can You Hear Me?

Our baby turned 2 last month. He has been such a blessing. We have seen so much joy and laughter fill our house since his arrival.

His beginning was rough as he struggled to breathe on his own. He was on oxygen for several days after birth and lost weight. Once his breathing eased he began growing and has not stopped. For the most part his development has been on track.

He did not begin babbling when he was "supposed" to. He turned one and was just saying "dada" regularly and not much else. 

We were dealing with issues with food sensitivities in A. The doctor had us documenting any reactions we saw and trying to avoid foods that caused the reactions until we could get in with an allergist. None of the reactions were serious and so many things seemed to be causing the reaction so it was time consuming just trying to find foods that were "safe" to feed him while waiting on the specialist appointment.

As he turned 18 months he was saying "dada", "ball", "cat" and occasionally "mama". The doctor said he was concerned but would re-evaluate at 2 years since A was beginning to babble much more. It was our hope that he would catch up. Meanwhile our specialist appointment was approaching to check on the possible allergy.

In those 6 months I worked with him on speaking. Reading to him, playing games, singing songs. I would give him directions to follow and he occassionaly would catch on. By 20 months he was able to bring me his sippy cup when I asked for it and could get his pacifier when it was bedtime. I could say "Its bedtime," and he would get his paci and go to the door to the bedroom. As far as any new "speech" he said "juice" once but never again and he said "cup" once. He would babble up a storm and pretend talk on a phone using expressive faces and hand gestures like he was speaking fluently. But no new real words. He loved to point to the alphabet on his toys and say sounds as he moved to each letter but they were not the real sounds or the real letters.

At his allergist appointment we were told he had sensitive skin but no true allergies so he was cleared to eat all foods like normal once more and we could use a skin barrier cream if we were concerned about the redness. The allergist then looked at me and said "How do you feel about his speech?" I assured him our pediatician was on top of it and the allergist said "I wouldn't be doing my job as a doctor if I didn't mention it." Obviously we were not making enough progress.

Shortly before his second birthday I had a lady come up to me as I picked A up from the nursery and ask me if he was hard of hearing. I was surprised and assumed she meant because of his lack of speech. She said that it wasn't his speech that made her question it. She had tried to get his attention several times and he seemed like he couldn't hear her and then she tested a few different ways to see if he would turn to her and he never did. This shocked me because I am with him most days and I had not put it together. We knew it was hard to get his attention but just assumed he was being stubborn or distracted. He seemed to hear when his dad called him from downstairs and he seemed to move to the music on his shows.

As the days passed and I began observing him differently I began to see things I hadn't put together before. He always stood in front of the television when his shows were on. He had always done this and we thought it was just because he didn't like to sit to watch them. So I put him on the couch and turned the volume of the tv up and was floored when he stayed on the couch laughing and watching the screen. I turned the volume back down and he immediately got off the couch and stood in his spot wiggling back and forth as he watched. I moved him back to the couch and he immediately got back down to the floor in front of the TV. I turned the volume back up and put him back on the couch and he sat and stayed for the remainder of his show!

I began speaking louder to him as I read him stories and sang the alphabet song. He began trying to imitate my sounds. Still not many words but we were just beginning.

At his 2 year appointment the doctor said he was globally delayed and mentioned Autism to me. I asked if we could have his hearing tested. He said they could do the screening right there. The nurse came and hooked up the machine and the right ear passed. When she tried the left ear she thought the machine wasn't working right so she tried it a few times. Finally she showed me the screen as nothing registered. She went to tell the doctor that his left ear failed the test.

We got refered to the children's hospital for hearing tests and speech evaluation. 

I began researching unilateral hearing imparment in toddlers and learned a few things I didn't realize before. In our minds if he can hear out of one ear then he should be fine but through reading I found that it isn't the case we use both ears to filter what we hear and when you only have one ear that is functioning correctly there is no clear way to filter the sounds well. So it makes it hard for him. He can focus on one sound at a time. When his show is playing he isn't intentionally ignoring us when we are calling him he just doesn't hear us calling to him. Some things that have helped: having the room quiet while I read him a story, having him sit on my lap with his good ear towards me, speaking louder than I normally would, and making sure we have his attention when we give him directions. All in all we have seen him gaining some speech with just these small changes.

His appointment with the children's hospital won't happen until the end of the month. Until then we will continue to try things and see where we get.

I don't know if this hearing loss is permenant or if it can be fixed. Two of our boys needed ear tubes in elementary school when they could not hear. Both of them were speaking before that happened. In both cases thier hearing improved once they got the ear tubes. If it is just something simple like that we will be excited and thankful. Until it can be fixed we will need to work with him where he is at and let him have the volume turned up as we teach him letter sounds and words. We will work with speech therapy to get him caught up once he is hearing clearly as well.

If it is something that is permanent we will continue down this road and see what is in store. I have never been there and we aren't there yet. I will try to research and learn what I can.

I see his desire to communicate and his excitement at interactions with us. I believe once he catches on there will be no stopping him from telling us all the things on his mind!

As far as the global delay, we will see what the future has in store. Part of me believes most of the delay is due to the inability to hear clearly. So we will tackle one thing at a time and see where we end up.

My oldest son has been diagnoised with high functioning autism so it is not beyond reason that A could also have autism. One step at a time and one assessment at a time. No diagnosis needs to define him. But the more information we have the better we can work to meet any needs he may have moving forward.

Opening the Windows, Feeling the Light

 On this road I have had many moments where I didn't know what God was doing. I still cannot fully comprehend what he has in store. The darkness I was going through 3 years ago has ebbed. Light is shinning through again. It isn't the same light but it is light. Ministry is not in my future right now. My family is whole and my spouse is beside me in a church pew singing songs of praise to our Savior again. He has joy in his heart and laughter in his eyes. For all that I am so ever grateful.

I cannot put into words the trial the past 5 years have been. The light began to come back slowly. It seemed like it never would. I have learned that it might never be exactly the same as it once was and I am okay with that. I think, in a way, this is an even deeper truth then we had before. A stronger togetherness then previously seen. A bond that has been through some fires and tested, and held.

I discovered my anxiety was not under control and was able to find a solution that is working well for me.

My husband found a profession that he enjoys and runs his own business out of our basement.

I was working two jobs to support our family while my husband was in the midst of his battles. We had the COVID pandemic and shut downs where he couldn't have worked much anyway while caring for the kids at home. It was a big test in the midst of all the rest going on. I was in an essential possition when it came to both my jobs so I was kept busy. There were always extra shifts to pick up.

As the darkness was beginning to ease we decided it was time to try for another baby before I got much older. I had decided that after a certain age I didn't want to have any more children and my husband really wanted another. We welcomed a baby boy into our family February 2021. He was born early and spent a week at the hosptial. My body did not handle the pregnancy well. I am glad that I knew he would be my last baby.

After having the baby I quit my part time job and tried to focus on my main job while having a new baby. My husband was struggling still with some things so it wasn't very easy. When my daughter made it clear that traditional school was not working for her I made the decision to quit working altogether to stay home with the baby and homeschool her. I enjoyed my job and quitting it was hard but it was something I knew I needed to do.

My husband's business was taking off and doing well. He needed to focus on that and his other issues.

Staying home and teaching my daughter have been incredible. I have grown my relationship with her in many ways and I have been able to see her learn and push herself. She doesn't always like homeschool but she is thriving and the spark I have seen in her is encouraging.

Being able to be the caregiver for my new son has been a gift as well. I am enjoying the little moments with him as he is growing and trying not to take them for granted.

God has been gracious in so many areas of my life in these years. I see his hand working and supporting me in the darkest days.

Just seeing my husband beside me in the pew on Sunday is a reminder that God handles even the hardest things.

Walking Wearily

I have been here. I have written and rewritten posts. None came to anything I felt I could share publically. I saved them for my private viewing.

I have been walking in a darkness I couldn't see through.

The details are not important. What is important is that life doesn't go down a set path. There is nothing that says if you start out right everything will go the way you think it should.

Just because you marry a man who loves God and wants to serve with his whole life, it doesn't mean that somewhere down the road he will turn his back on God (Whether for a season or for a lifetime). Depression, rejection, disappointment, unbelief doesn't only plague those who are not serving.

Just because you have taught your children truth, it does not mean that when they leave your home they will follow the path God has set before them. The world can lure them astray. The lies of the devil can still flood their minds.

It is so hard to watch. It is hard to see it happen to women I look up to and love. But I never expected it to happen to me. Until the day my husband made excuses to not go to church. Being "sick", "tired", or work conflicts turned to just not coming at all. He stopped riding with us to Wednesday night, then it became Sunday mornings too. I saw the passion drain from him far before that. I watched it seep from him like a life force draining. His mood shifted, his anger quickened. It was so hard to watch. I thought "Not me God...Not him..." Through the past 2 years it went from "I just don't feel like it" to "I don't think I believe in that stuff."

This from a Bible college graduate who surrendered his life to service for the Lord. The man I fell in love with when I was studying to be a missionary.

What is God doing? What was I doing?

Christian depression is real. Feeling insignificant and usless. Feeling empty. Feeling alone.

Pray for those in ministry. Pray for those families in your church. Pray for the marriages. Pray for the men who shoulder the burden of leading the home. Pray for your spouse. Pray for Satan to not gain footholds. pray for God to reign and to make his presence known. Pray for light to shine in the shadowy spaces where there are hidden burdens and broken pieces. Pray for brothers and sisters to see the darkness before it creeps in. Pray they will have wisdom on how to be God's hands and feet in those places making sure the light permeates the spaces.

marriage

Marriage. People go into marriage so bright eyed and hopeful. They dream of the future minimizing pain, hurt, disappointment and weariness.

No "what ifs" matter. No distant challenges could ruin the joy.

They pledge vows to one another saying "I do".

Then the in sickness happens and mental health crisis causes one of them to face crippling depression...months of shutting the partner out as they deal with the deamons that daily threaten to control thier mind. Anxiety causes indesiveness and fear of failure. Making plans is a challenge. Just getting through the day is a matter of pushing and encouraging and begging. 

In sorrow: Loss of a child wedges an abis between you as grief hits in completely different ways. Fertility issues and navigating the steps to take if any. The pain that comes from a diagnosis of a child with a chronic illness or handicap. The loss of what we pictured life would be like for us and our child.

For poorer hits... First it's just a little extra spending but then the addiction comes to light and the insurmountable bills start pouring in. It wasn't what the partner thought they signed up for. Loss of a job and the bills are running behind but it's just one or two. It will get caught up. Can't find a new job until the electricity is shut off and then the water company is knocking at the door and you are too afraid to answer the door or the phone and you just want to pretend like no one is home. Groceries come from a food pantry and all taste like cardboard because they are past the expiration date...But you have to eat it anyway....

For worse...the yelling... The personality shifts. The change in career that doesn't just effect one person...it changes all of your lives. A move across the country away from those you love. Thier faith is rocked. They stop showing up for church. They stop seeing the importance of it all. They make decisions that are bad. They pick up habbits that don't align with your beliefs. Her drive leaves her and she gives you the cold shoulder night after night for months and months because she is tired...irritated...unwell...

Did you mean what you pledged?

Did those vows really mean what they said?

Marriage is not a beautiful perfect ring of sparkling joy.

Marriage is work.

We dive in head first into a shimmering lake only to find out there are boulders and jagged rocks just beneath the surface we we're lucky enough to miss on our way down. Navigating the waters around those rocks as the current of society is dragging us down is nearly impossible. Unless we stop trying to get through unscatched and unchanged. We must look down at ourselves and see that we are just as jagged and sharp and hard as the rocks we have just jumped into. We are going to bump and cut just as much as our partner is. Marriage is two imperfect people trying to live a perfect covenant that we are totally incapable of living up to until Christ comes. Being an imperfect person pledged to another imperfect person we are going to have some strife.

Marriage is not about the "I do"s because inevitably they will not be lived up to perfectly. It is more about daily pledging to once again give up and let go of the "I want"s and instead saying "I will".

"I will love my husband", "I will find a way to serve my wife today." "I will think about what he might need today."

Being a Mom

Being a mom has taught me several things.
It has taught me a new kind of joy. Your kids needs and desires come before your own. You learn to wear the same socks for 6 years because they still fit. And it makes you smile to be able to grant a desire your child has just so you can see the smile on thier face! The other side of joy is not so simple. Finding ways to make laughter in the midst of a storm. Being a rock for your children and reminding them to choose joy. It can only be done through being the example. Choosing to cling to true joy when plans fall apart and when life is downright hard. That is the kind of joy motherhood teaches. You are the beacon the whole household moves to. "Momma ain't happy..." I am sure you have heard it. It rings true as my mood sets off the whole house. My anxiety can cast a shadow upon the entire family. My anger causes a thick tension. My sadness brings out a little army of comforters who just want to curl up and be sad with me. But when joy is flowing and possitivity, light, and love form the foundation of our home, everyone knows it is going to be okay.

Being a mom has taught me a deeper kind of love. When I see the love of a good parent for thier child I see a mere shadow of God's love. The kind of love that loves anyway. The kind of love that says I love you enough to discipline you and correct you. The kind of love that loves when the love is not returned. A child in a store throwing a tantrum and the parent still picking them up and holding them close. The love that I have felt when I was at the end of my rope. Staring at a raging child throwing themselves on the ground in a sensory meltdown and the tears just running down my face as I prayed to God to help me know what to do to help them through it. Begging God to help them because I had done all I knew how to do and NOTHING had worked. And I still loved them SO much and just wanted them to know it would be okay.
The love that brings your world crashing down when a medical issue comes up and a big question mark is stamped over your child's head. Cancer? Chronic illness? "We need to run a few more tests to rule this out..." The love that wishes beyond anything else that you could just switch places with your child and take away their burden and pain. But you can't. You can only sit there beside them and hold them close promising everything will be okay (Even when you are not sure it will) as yet another blood draw is taken or IV inserted.

Being a mom has taught me that nothing is set in stone. My plans change. My routines get shifted. My idea of a healthy child is skewed. It was never in my plans to have 3 children who require regular appointments with therapists and/or specialists. They are each healthy and amazing they just require a little extra observation or medication to be sure they stay that way! I also never imagined having 5 children. My plan was 3 or 4 and then maybe in the future looking into foster care and possibly adoption. God had a different plan. In the midst of trying to figure out how to raise 3 boys, in the midst of wrapping my head around my baby growing into a child, in the midst of navigating developmental and mental health screenings, and in the midst of finally finding a new normal with a child with chronic illness we got a phone call that would change our lives! Yeah, my plans are not God's plans. My ways are not His. His are amazing, and crazy, and filled with so many surprises that make those in the world look on and wonder what we were thinking! But they always have a way of working out because God is God and I am man.

Being a mom is not cupcakes and rainbows. It is not glittery. It is hard. It is so hard. There are nights where your child goes to bed mad, screaming that they want nothing to do with you. There are days where your child acts like a monster and you have no idea what happened the to little angel that usually acts polite (or at least decent)! There are days when your child hurts and it breaks your heart. There are days when you hurt but you have to get up and keep moving for the sake of your children because life moves on. There are days when mama bear (or shark) need to come out and you may usually be the type to avoid confrontation. There are days when you have to show grace and meekness by biting your tongue and smothering anger because it is not the battle that needs fought right then.
Being a mom takes strength and dignity and wisdom.
Deep breaths and strong stomaches, able and willing hands, comforting arms...

Doughnuts to Blessings: Simply Trust and Obey

This morning we were running around a little crazy. My 4-year-old was sick and my husband was staying home with him since he also was starting to feel ill.

I got up and was helping get kids ready and ironing shirts.

The kids started asking for breakfast.

I had a plan to take them to get doughnuts before church but I didn’t want the sick child to hear since doughnuts would not go well with the tummy bug.

“Mom! We are almost out of milk. I was going to fix my cereal and we are out of milk!” my 9-year-old begins to whine. He is not a big morning person.
“I know we are out of milk. I already have a plan. Just don’t eat cereal right now. Please just get ready to go.”
“I will just grab a granola bar.”
“Put the granola bar back please. I already have a plan.”
“Aww. Mom, I want a granola bar.”
“Please just obey.”

My 3-year-old says he wants me to get his breakfast as he leads me towards the potato chips. “No, buddy. You are not having chips for breakfast.”
“But that’s what I like,” as he flashes his winning smile.
“When have you ever had chips for breakfast?”
He just kept smiling.
“No bud. No chips. I will get you some breakfast later.”
He began to pout and then cry when I didn’t give in.
“I’m so hungry! You make me angry.”
It was funny. The words that came to my head and out of my mouth, “Bud, please just trust me and obey. I have a plan. I promise you will get to eat.”

The thought that went through my head was how God often does the same thing to us and we often respond in the same way.
“My child, I have a plan for you. I have a plan that is good. A plan that will bring you joy and fulfillment if you just trust me and obey me. I already know the problems you see in your life. I see the shortcomings you feel you have. I have something waiting for you. Just get ready and let me pour the blessings out on you.”

“But God, I am hungry now. I want to just have this thing that is sitting in front of me. It is right here and it doesn’t look so bad.”

“Just wait a little longer. I have something so much better.”

I realize a doughnut is not better nutrition wise but my kids LOVE the treat of a doughnut. They were thrilled when they realized what they were going to get for their breakfast this morning. It was worth the wait. It was worth missing out on granola bars and cereal.

Trust and obey and prepare for the blessings. God is the perfect Father who gives generously and is marvelously good. His timing is perfect and his plans are great. He has our good in mind.