It's Been A While

The fall semester has ended and the new year has begun. Whew! It went by so fast. The girls each have ABA (applied behavioral analysis) therapy twice a week for three hours, and Bear attends SP (speech), OT (occupational therapy), and PT (physical therapy) sessions at the local school twice a week. Our only free day is Tuesday, and we use that day to go to the library or on field trips. It keeps us very, very busy. We are loving our new curriculum from My Father's World, and school is going well.

Why is it then that I feel so lost? Is it that both girls are officially on the autistic spectrum and learning to deal with all of that? No, I don't think so because we already knew about the issues; now we just have a label to go with them, a label that says, "See, it's not all in my imagination." Is it that we've been looking for a church for nearly six months? Not really. We miss regular fellowship with other believers, but our faith hasn't faltered. We're just in a time of waiting, trusting that our Heavenly Father knows exactly what it is that is best for our family and will lead us there.

I think this lost-ness comes from my relationship with my children. It is a difficult thing when one of your children's first reaction to any stressful situation is to hurt you, when you pour on love and try to be patient, and for all your effort you get a couple of great smiles and a whole lot of scratches and hair pulls. It's a difficult thing when another child speaks kindly to you only when she wants something from you. It's hard when this same child won't even do something she likes to do just because you were the one who suggested it, or when she balls up her fists at you or runs away and slams the door for simply being asked to get dressed in the morning. I constantly wonder how much of these negative behaviors are related to maturity issues vs. spectrum issues vs. heart issues.

The most difficult part of this is realizing that rather than being the calm, even-tempered mom you ought, you are the mom who yells at preschool-age children. You're the mom who just wants to be left alone. You're the mom who wants to send the children to bed right after dinner - every night. (You don't, but you want to.) Rather than being the mom you want to be, you're the mom you never wanted to be.

What is the answer? Is it time? Is it (more) prayer? Are we stuck in a never-ending pattern? Will it ever get easier?

Wow, this is not where I thought this update was heading when I started. The only thing that keeps coming to mind is Proverbs 31:26, "She openeth her mouth with wisdom; and in her tongue is the law of kindness." Maybe I just need to take a step back. Maybe I need to just let things go more. Maybe I need to ignore the bad behavior rather than feeding into it. Maybe...

Should I post this? Do I really want anyone to know how much I struggle? I know I'm not the first parent to struggle with their children, but usually people talk about frustrations with youth, not preschoolers. Like Paul, I want to do good but don't; I want to avoid evil, but I do it anyway. (Romans 7:18-19) What then is the answer? I think it is that I keep on keeping on. I keep trying to bless my children, I keep trying to keep my tongue under control, and I keep my eye on the prize - sharing the love of my Savior with my children so that one day they will claim Him for themselves.

"Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus," (Philippians 3:13-14)

In the Trenches

Today is just one of those days, the kind with a slow start that keeps hitting a dead end repeatedly.

Bear is now officially off her seizure medicine, and the sleeplessness has kicked into high gear. (I think I did better when I hardly ever slept more than 3-4 hours. The occasional night of 6-8 hours of sleep is knocking me around.) Bug woke up grouchy and demanding after I had managed to accumulate 3.5 hours of sleep throughout the night. She then proceeded to wake the rest of the house with her expansive use of lung power. It's been a battle ever since.

Bear was so tired she didn't eat lunch before asking to go to bed. Bug, however, just became more and more overstimulated. I spent 20 minutes as a human weight blanket getting her calm only to have her start all over again the moment I got up.

It's days like this when I cling to the knowledge that God knows and cares all about me and the very details of my life.

Matthew 10:29-31 says, "Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.  But the very hairs of your head are all numbered . Fear ye not therefore, ye are of more value than many sparrows." This is also repeated in Luke 12:6-7.

Do I always like being in the trenches? No. Is it worth it? Yes. God gave me these babies not only to care for them but also to refine me, and I've got a long way to go. 

The song "Refiner's Fire" by Brian Doerksen comes to mind at times like this.

 

Verse 1:

Purify my heart
Let me be as gold and precious silver
Purify my heart
Let me be as gold, pure gold
 

Chorus:

Refiner's fire
My heart's one desire
Is to be holy
Set apart for You, Lord
I choose to be holy
Set apart for You, my Master
Ready to do Your will
 

Verse 2:

Purify my heart
Cleanse me from within
And make me holy
Purify my heart
Cleanse me from my sin
Deep within

How is your day in the trenches going? Don't forget that He knows all about you, too. Maybe that problem you're having at work, with your spouse, or with your children should be looked at as an opportunity to grow to become more like Him. 

No Toothbrush

Bear has been seizure free for 2 1/2 years, and we are finally beginning the wean off of her seizure meds. Because Bear's seizures were not easily treated, her neurologist has been reticent to take her off the meds too early. Her EEG's for the last year have shown as normal but sluggish. In other words, the meds are keeping her brain calm to prevent seizures, too calm.

Her language development has been the biggest hurdle of all, and we believe it is her struggle with language that has propitiated the aggressive tendencies she has. (She has been able to learn some sign language, but this is also quite slow for her.)

Since we started weaning her off in April, she has become increasingly more alert and able to vocalize needs and wants. We try to reward her use of words by giving her what is requested though we do have to reign in the requests for "cookie" and "oc-late" (chocolate). This morning she told our aid "no toothbrush." Isn't that awesome! We had to let her know that teeth brushing was not optional, but we really appreciated her words. We are so excited for this development and can't wait to see how she'll take off once she's completely off the meds!

Encouragement

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.  Philippians 4:8

As a mom, encouragement is something that is easy to give and hard to receive, but it is sometimes desperately needed. I've had women tell me that I am such a good mother or that I am so strong and patient, and honestly, I smile politely and say thank you all the while thinking, "You don't know. You don't hear how often I lose my temper, how frustrated I get about things that seem to be nearly unchangeable."

In my state, when a child can not be cared for outside of an institution, should the parents not be doing it, they can qualify for a certain amount of extra caregiver time within the home. That is to say, I have an aid that is with me five days a week to help out with Bear's needs. It took a LONG time to admit that I needed help, but finally last spring I did. Our first aid was happy but wholly unreliable, and then we met J. J is a gift straight from God. She is a young Christian lady who loves my munchkins, and she is calm but firm with them, and though she frequently bears the physical marks of  the outbursts of my youngest, she always has a smile in her heart and on her face.

Because J is with me daily, she witnesses my shining and not-so-spectacular mommy moments. On Mother's Day she brought tears to my eyes with this text message:

Happy mother's day! You're such a strong loving person. Your kids are very blessed to have you as their mama. You're like a warrior in the mom world. Have a great day and soak in whatever relaxing time you can! :)

It absolutely amazes me that someone who sees me day in and day out can say such wonderful things about me as a mom. Sometimes I feel so defeated in thinking if only I were more patient, if only I didn't have that A-type personality, if only, if only... Then I remember that's exactly what the evil one wants. He wants me to compare myself to other moms so that I will become discouraged. He wants me to give in and give up on my calling to raise my children in the nurture and admonition of the Lord. (Ephesians 6:4)

Sometimes, when Bug is frustrated with the world, she will announce that I am not her parent any more, and then she asks for me to tell her this story.

When you were born, God saw that you needed a momma. He looked out over the whole world and found me. He said, "Will you be her momma?" I said, "Yes." Then God looked at your daddy and said, "Will you be her daddy?" He said, "Yes." You see, God gave us to you and you to us. So no matter how frustrated you are with us or we with you, we will always love you, and we will always be there for you."

It's not just a story; it's the truth. God did speak to my heart and say, "Will you do this?" "I want to, God, but I'm not sure I'm able." His assurance came to me through scripture.

I can do all things through Christ which strengtheneth me. Philippians 4:13

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9

When the shadows of doubt fall, I need to remember that it is only in His strength that I continue on. He doesn't want someone who already knows everything to raise these children; He wants someone who is desperate to learn from Him. A fellow mom shared this verse with me, one that I had never really noticed before: There is therefore now no condemnation to them which are in Christ Jesus, who walk not after the flesh, but after the Spirit. Romans 8:1

God doesn't condemn me for my daily slip-ups, rather He urges me to seek Him. He doesn't want me to focus on the negative, but rather on that which is true and right. He loves me and has called me to share that love with my children.

To anyone reading this blog, thank you for any encouragement that you have sent my way, and if you are daily or even weekly entering into someone's world, take the time to speak encouragement into their lives. Remind them that Our Father does see, know, and loves them unconditionally.

Helping Them Understand

When Bubba is tired, he sits, he lies down, he relaxes, not so for Bug and Bear.

When Bug is tired, she seeks out more and more stimulation until her brain is so "jazzed" that she is no longer in control of herself. Sometimes, it's a hard thing as a parent to force your child to take time to be quiet. She will scream and wail and throw things as you gently try to put her to bed. The blankets have to be applied in the right order with just the right amount of light and noise. You hear the pitiful cries, all the time knowing that this is what she needs, and you leave quickly before things escalate again. Usually, after twenty minutes or so of forced quiet, she is back to her happy self, almost unrecognizable from the person she was just a few minutes before. She has been this way since she was only a few months old. One of the biggest things we work with in therapy is getting her to recognize when she needs a break before the explosion occurs.

Bear becomes violent when tired. She scratches arms and faces and pulls hair when she needs a break. Bear has very few words, and her frustration usually comes out in a more physically aggressive way. Bear does not like to be laid down, or enjoy routine like Bug; rather she simply needs to be isolated from everyone else for a while. We put her in her room where she will play quietly for several minutes until she's ready to join the world again.

One of the main things I am learning as a special needs momma is how to help my girls recognize their own emotions. Self-control is a much harder lesson, when they cannot understand the effect their actions have on others in those moments of complete melt down.

I know God designed each of my babies in such a unique way. I am so privileged to be their momma and help them each find God's purpose in their lives even if it's just the little bitty things like helping them to understand that we all need rest.

Perspective

Sometimes, we all need a little perspective. You know how it is. We all have those days when the five-year-old can't seem to remember what you've told him for a nano second, the four-year-old is alternately screaming at the top of her lungs and crying every five minutes, and the baby keeps removing her diaper in order to be able to smear its contents around the room.

I don't know about you, but I can easily find myself having my own little pity party on those kinds of days. That's when it's important to have a little perspective. Sure Bubba is absent-minded, but he's so very caring towards his sisters. Bug's emotions can swing from end to end, but when she lands on happy, she wants to share it with the whole world. Hey, at least Bear is learning that she doesn't like a dirty diaper.

Recently, I've been learning perspective from a friend I have gotten to know a bit through the preschool weekly reading time at our local library. This dear sister in Christ is a shining example of how we should run to our Heavenly Father when things don't go the way we had planned. Denise is the mother to three young boys having previously lost her little girl to a debilitating disease. Her youngest son has undiagnosed (not for the lack of trying) mitochondrial disease and has been put on hospice at this time. Short of a miracle, her little boy may never be more than two years old.

She blogs regularly about the baby's condition (http://shaunsteyaert.blogspot.com/), and her posts are always full of praise for the gifts that God has bestowed upon her. Even in the days of grief, she is able to find solace in the knowledge that soon her boy will have eternal healing and will be walking, talking, and playing in heaven with Jesus.

This was the status she shared on Face book one January day.

"'Fear not for I am with you. Be not dismayed for I am your God, I will help you I will uphold you with my righteous right hand.'
~Almighty God, Isaiah 41:10
Thank you, God, for seeing us through our days, hard or easy, sad or happy. Thank you for knowing what is in our hearts even if we don't say it, forgiving our weaknesses and loving us the same. Thank You for hiding us under Your wing, holding ...us when we need comfort, and listening even when we are angry. Abba, Father, I love you and thank you for my storm. Refine me and our family so we may be what you designed us to be. Give me patience, wisdom and grace. Stay with me through it all, as I know You are, and may I honor You through the trial. Amen."

 

How many of us thank God FOR the storm? We always want a way to avoid the storm or to get out of it as fast as possible. I thank God for women like Denise, women who teach me more each day about completely and fully relying on the Creator of the Universe.

 

So, in those days when toddlers or teenagers are driving you crazy, would you join with me and grab onto a little perspective. Let's thank the Lord God for the gifts we have, and realize that sometimes the storm is just what we need.

 

It's Not Just Me

Sometimes, when your kiddo's special needs are social/emotional, it's hard for others to understand what you're going through. Bear's difficulties are more obvious, with medical explanations to accompany most of them, but it's not so for Bug.

Bug's anxiety issues leave her inflexible and controlling, a combination that easily can take over the atmosphere of a family. After a few rough incidents a couple of weekends ago, I spoke with her therapist about possible things we could do to help curb these behaviors. It was pretty interesting when the therapist told me that Bear was a much easier case for her. With her developmental delays, she's a pretty text-book case. However, Bug has her puzzled. She's just not exactly sure where we should start in order to help her. Sometimes it's nice to know that it's not just us, that we are not the only ones who see the daily struggles she has within herself and with the world around her.

This is the song that often runs through my head when I get a bit overwhelmed by our circumstances.

"One Day At A Time"
(Marijohn Wilkins/Kris Kristofferson)

Verse 1
I'm only human; I'm just a man(woman)
Help me believe in what I could be and all that I am
Show me the stairway
I have to climb
Lord for my sake
Teach me to take
One day at a time

Chorus
One day at a time, sweet Jesus
That's all I'm asking from you
Give me the strength to do everything that I have to do
Yesterday's gone sweet Jesus
And tomorrow may never be mine
Help me today
Show me the way
One day at a time.

Verse 2
Do you remember
When you walked among men
Jesus, you know when you're looking below
It's worse now than then
Pushin' and shovin' crowdin' my mind
Lord for my sake
Teach me to take
One day at a time