http://sfari.org/news-and-opinion/news/2013/duplication-of-rett-syndrome-gene-triggers-immune-problems?utm_source=Autism+research+news+from+SFARI.org&utm_campaign=e0281b169d-SFARI_Newsletter_20130205&utm_medium=email
Thursday, February 7, 2013
Mecp 2 Duplication - Explanation of Syndrome and Most Current Research
http://sfari.org/news-and-opinion/news/2013/duplication-of-rett-syndrome-gene-triggers-immune-problems?utm_source=Autism+research+news+from+SFARI.org&utm_campaign=e0281b169d-SFARI_Newsletter_20130205&utm_medium=email
Monday, September 24, 2012
http://www.youtube.com/watch?v=u8fKswURt6
Thursday, September 20, 2012
Loving the Insensitive
As a mom of a son with special needs, I peruse a number of chat pages for families whose loved ones have special needs. Family members often share that people make insensitive comments to them or that their special loved ones suffer indignities because of the ignorance of others. Many times, when I read the offending things that were said or done, I find it stunning that people can be so insensitive. Yet in most cases, I believe that the owners of the offending statements/actions would be horrified to know how they had offended. If I mentally step out of my circumstances (as someone who walks in the trenches and speaks the lingo of special needs families), I can understand why the thoughtless comment was made or the thoughtless act was committed. I’m not saying that I think it was right, but I do understand where it came from.
Another thing families often mention as bothersome is staring. People stare at our children. With Liam’s wheelchair and his often loud vocalizations, we can’t really go anywhere without people staring. I think it is natural for strangers to wonder, and I actually find it fairly comfortable if onlookers allow me to introduce Liam and tell them or their children a little bit about him. I have never been a very private person, though, and I always love a reason to chat. I know that not every family feels this way. Many just want to be able to go places and do things with the relative privacy that others take for granted. One website that I frequent even sells T-shirts that read “While you were busy staring at my son wondering what was wrong with him, I was thinking the same thing about you and your manners.” While this might be absolutely true, I am not sure I would want to display it on my shirt.
How do you deal with out-of-place or misspoken comments? What is your reaction to staring? If your child is able to notice such things, how do you guide him/her to deal with them?
I certainly don’t have an answer for how to react in every individual situation, but I know that scripture is our guide to every situation in life. 1 John 4:7-21, which has been titled “God’s Love and Ours,” is an excellent place to find direction for the sticky, uncomfortable situations we all face daily. You might read it and suppose it’s a great guide for others in how to show love to our families and children. While that is absolutely true, it works in reverse as well. This section of scripture is a wonderful guide for us - parents weary of a world that doesn’t understand our children and who want to defend them - in how to react and why.
1 John 4 God’s Love and Ours
7 Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 8 Whoever does not love does not know God, because God is love. 9 This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. 10 This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. 11 Dear friends, since God so loved us, we also ought to love one another. 12 No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.
13 We know that we live in him and he in us, because he has given us of his Spirit. 14 And we have seen and testify that the Father has sent his Son to be the Savior of the world. 15 If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God. 16 And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him. 17 In this way, love is made complete among us so that we will have confidence on the day of judgment, because in this world we are like him. 18 There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
19 We love because he first loved us. 20 If anyone says, “I love God,” yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. 21 And he has given us this command: Whoever loves God must also love his brother.
The simple answer is this: Although we are sinners and therefore offensive to God, he loved us so much that he sent Jesus to die for us. He shows his love daily with abundant earthly blessings. Because we are the recipients of this amazing love, and through the Holy Spirit living in our hearts, we are able to show love to others – even those who are insensitive to our loved ones.
Does this sound overly simple and extremely difficult to you? Sometimes it does to me, too.
I was discussing Liam’s cognitive progress with one of his specialists. This specialist is an excellent doctor who usually has a fantastic manner. We have had him on Liam’s medical team for three years now and have been very happy. However, as we discussed the cognitive progress, he began telling me about how his Labs (yes, Labrador Retriever dogs) do the same things as Liam. I felt shock as I realized that this wonderful doctor was, indeed, comparing Liam with his dogs – and they were on similar levels!!!
We could go all different directions with this, but here is the thing: In love for others, we take their words and actions in the kindest possible way. So when things like this happen, I understand the other person with love. I know that while the doctor was certainly wrong to compare my precious boy with his Labs, he intended no unkindness. Does that mean I don’t point out his mistake? Not necessarily. As a Christian, I don’t stop educating others about how to love and accept Liam; I just do that educating with love.
My primary earthly purpose is to glorify God and share Jesus with every breath that I take. When I do that first and keep my focus on Christ and his sacrifice for me, kindness and love will naturally flow out of my heart.
When this is a struggle, I can pray every day, many times a day, that God the Holy Spirit will work kindness and love in my heart. I can ask God to give me HIS love for others when mine is running low. God will be with me and help me to show love to others. I can return over and over again to this section of scripture to be reminded that God is living in me and I can do all these things through him. And through my example, prayer, and sharing scripture, I can help my children to cope with others’ less-than-loving actions as well.
Will this ever be simple? No way. Will there be days when I am weary and fail at being kind? Absolutely. Will there be times when instead of teaching others in love I give them “what for”? Unfortunately, yes.
Thanks be to God that he has already washed those mistakes away. His robe of righteousness is mine (and YOURS)! May we share our JOY daily.
Friday, September 7, 2012
Liam Learns to Sit Up! -- www.youtube.com/watch?v=mMKbqOvE9xk&feature=relmfu
Liam is 3!!! -- www.youtube.com/watch?v=4cFgjHIIgHQ
Not about Liam, but another mecp2 family…
Brighter Days for MeCP2 -- www.youtube.com/watch?v=eglYr_rpXnM
Wednesday, November 23, 2011
Thankful For More Than Mittens?
When I worked in an urban after-school ministry with many children of poverty, we once took a group of children to spend a day at the county zoo. Spring was just beginning, and the day started out extremely cold. Every boy and girl was expected to wear a hat and mittens. As the day wore on and the sun became brighter, things warmed up. By lunchtime the kids wanted to take off their hats and mittens. I noticed one of the girls remove her very nice, new-looking hat and mittens and toss them into a trash can. I immediately asked her why, and her reply was, “I don’t want to carry those. My mom got them free, and she will get me another pair free, too.”
You and I have been given so much more than a free hat and free mittens. But are we just as ungrateful?
Although we deserve only punishment for our sins, God saw fit to send his only Son to the cross of Calvary for us. Through his death and resurrection, we will live eternally in heaven some day. God has given us his beautiful Word so that we can know him better as our dear Father in heaven. God sent his Holy Spirit into our hearts, and through his Word the Holy Spirit created faith and nurtures that faith. God truly is the gift-giver of all time! And he doesn’t stop there . . .
Every day, God provides us with earthly blessings in abundance. We have homes with heat in the winter and a/c in the summer. Most of us drive cars. Our children go to schools, and many have amazing teachers and therapists who are emotionally invested in their learning and growth. The list of blessings goes on and on and on and on.
While God blesses us so greatly, we are still living in a world marred by sin. Often our blessings are shadowed by hardships and difficulty. Even in the midst of the hard times, our God gives us so much to thank him for. Psalm 30:4-5 says, “Sing to the LORD, you saints of his; praise his holy name. . . . Weeping may remain for a night, but rejoicing comes in the morning.” Similarly, Psalm 126:6 observes, “He who goes out weeping, carrying seed to sow, will return with songs of joy.” You see, even in the midst of great hardships and pain, the cause of our inner joy still burns within our hearts. Our faith in Jesus and our hope of heaven give us joy that defies our circumstances. We know joy will come in the morning, and that knowledge carries us through.
So how can we thank a God who abundantly blesses us and has given us his own Son as the ultimate sacrifice? How do we thank a God who gives us earthly blessings with such abundance that we cannot even count them all? The Bible has a lot to say about thanking the Lord:
Psalm 100:4: Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.
Psalm 105:1: Give thanks to the LORD, call on his name; make known among the nations what he has done.
Psalm 106:1: Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever.
Isaiah 12:4: In that day you will say: “Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted.”
What does thankfulness look like in our lives? Out of thanks, many people offer prayers and worship to the Lord. Many offer acts of service to other people. Many offer special monetary gifts to missions of their choice, their church, or someone in need.
In Old Testament times, the Israelites had clear guidelines for bringing offerings to the Lord. The Lord had specified what could be brought, how it should be brought, and how it would be sacrificed to him. These offerings were a picture of the Sacrifice that was to come. Since every law was fulfilled in Christ, we don’t have specific rules about our sacrifices.
We recall the Bible story about the first children in the world, Cain and Abel. When they became workers, they each brought God an abundant thank offering, but God found Cain’s to be unacceptable. It wasn’t unacceptable because of its content, but because of the heart of its giver. Cain did not give out of the overflow of his heart, and so his offering was unacceptable. When we think of the blessings we have been given so abundantly and spend time in God’s Word, our thank offerings will begin to overflow out of the love in our hearts. Colossians 2:6-7 says, “So then, just as you received Christ Jesus as Lord, continue to live in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness.”
When we live “overflowing with thankfulness,” others take notice. (Writing that made me laugh because, who are we kidding?! Our children have special needs - others take notice of us anyway!) As they take notice, it is our joy – our defiant joy in the face of difficulty - and our focus on God’s grace that they will note. The Holy Spirit will use us to bring the news of Jesus to these people. When we live this way, our lives become a thank offering to God. Every day becomes Thanksgiving Day.
So this Thanksgiving holiday, maybe while we are thanking God for good food and enjoying our families and friends, we can share our inner joy, our relationship with Jesus, and our hope of heaven with others. We don’t need to use words. As they watch us overflowing with thankfulness (maybe even in the midst of difficulty), they will see. When our lives overflow with Christ like this, they are an offering of thankfulness to God – an acceptable, from-the-heart offering. May our offering this Thanksgiving be an overflowing life!
Tuesday, October 18, 2011
Our Weakness - His Strength

I wonder if these people have any idea of the fear and grief that my heart feels each day? I know what it is to look forward to my typical child's future, but when I imagine Liam's adulthood, I feel huge amounts of fear. I feel fear that he WON'T live to be an adult. I feel fear that he WILL live to be an adult who cannot walk, cannot care for himself, and must be diapered. I have great amounts of anxiety over what that will mean for my life. In fact, my fear about Liam's future is so great that I consciously do not allow myself to think about it! So while I dream about my little girl's future, I don't even go more than a year out with Liam! Because of the fear and anxiety that I have, my motto with Liam is "one day at a time." These doesn't really sound like the thoughts of the "special and very strong" person that people seem to think has a child with special needs.
My fear about the future is only one aspect of my weakness. I won’t begin to list them all for you, but I will assure you there are MANY! I have quite a network of friends whose children also have special needs, and all of our sentiments seem similar. Although we can each look around us and see abundant blessings, inside there is a part of us that is WEAK, EXHAUSTED, WORRIED, AND TERRIFIED.
So I wonder if REALLY the opposite is true about the "strong, special" parents of kids with special needs. Maybe God chose us not because of our specialness or strength, but because we have weaknesses in certain areas. Please hear me correctly: I certainly do not mean that we were chosen as a punishment for certain weaknesses. Rather, maybe God allowed the challenges associated with parenting our children into our lives, not because we are so special or so strong, but because in our weakness HE will be glorified. This is true of other challenges in life; why wouldn't it be true of ours?
When Paul is talking about the "thorn in his flesh" he says, "But he (the Lord) said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong" (2 Cor. 12:9-10).
Gideon is a perfect example of the Lord’s power being made perfect in human weakness. During his time, the Israelites were in the hands of the Midianites. The LORD went to Gideon and, after calling him a mighty warrior, told him, "Go in the strength you have and save Israel out of Midian’s hand. Am I not sending you?” (Judges 6:14). I can imagine that Gideon was in total shock. Maybe Gideon thought that God got the wrong guy – mistaken identity? Gideon immediately reminded God that not only was he the weakest in his family, but his family was from the weakest tribe. What an illogical choice he was. Human thinking says, "Really, is this the man whom God chose to save Israel?!" The Lord's answer is "I will be with you. . . . Peace! Do not be afraid." (Judges 6:16,23).
How many times have I reminded the Lord that, like Gideon, I am not the right choice for this “special” assignment? My list of reasons that I am ill prepared to mother a child with special needs is at least 100 items long. I remind God of these reasons (and of all of the things that I WAS prepared for - all the typical milestones and growing pains), and his answer in scripture is "Am I not sending you?"
We don’t know if God chose us because of our weaknesses or despite them. Truly, it doesn’t matter. We do know that he has given each of us a child with special needs. We know all of the unexpected ways that our child has blessed our lives, but we also know that our dreams and plans have changed because of this special blessing. God doesn’t put us on this path and desert us. He promises to go with us, just as he promised Gideon. He promises not to give us more than we can bear. He promises to carry us when the load gets too heavy.
It didn’t matter to God what Gideon’s qualifications were or what tribe he was from, nor does it matter what our weaknesses are. What matters is who God is and what his strengths are.
Author Max Lucado uses the story of a commercial flight as an example of this.
“I write these words on an airplane. A late airplane. An airplane different from the one to which I was originally assigned. My first flight was cancelled for mechanical difficulty. I and a few dozen not-so-happy campers were down-loaded onto another plane. As we checked into the new flight, I heard many of my fellow passengers ask, is this plane ok? Any mechanical flaws with this 747? We were full of questions about the plane’s ability to fly, but the attendant had no questions about our ability to do the same. Not once were we asked, 'How about you? Can you fly? Can you flap your arms and get airborne?'"
"Bizarre questions. My ability to fly is not important. My strength is immaterial. I’m counting on the plane to get me home, hence I inquire as to its strength."
"Need I make the connection? Your achievements, however noble, are not important. Your credentials, as remarkable as they may be, are of no concern. God is the force behind this journey. His strength is the key factor. Focus not on your strength, but his. Occupy yourself with the nature of God, not the size of your bicep.” (Max Lucado, Entering His Presence)
The pages of Scripture contain so many other examples of God being glorified through human weakness. David the little shepherd boy, equipped with stones and a sling, is able to kill the giant. God’s strength is shown through human weakness. Moses, who like Gideon tells God that he is not equipped to lead the Israelites, is able to do exactly that and do it well! God’s strength is shown through human weakness. Solomon feels ill equipped to lead and prays to God for wisdom. I Kings tells us that people from all over the world sought out Solomon because of his great wisdom. God’s strength is shown through human weakness. Mary, a young virgin girl, becomes the mother of the Savior. God’s strength is shown through human weakness. Saul, a vicious persecutor of Christians, becomes Paul, who shares Jesus with countless hearts. God’s strength is shown through human weakness.
These examples and many more in Scripture show us how God repeatedly chooses to work through human weakness to show his glory. Why do I share this with you? I want you to know that we don’t have to be these amazing, strong, special moms and dads who can do it all.
Gideon and his small, weak army defeated the great Midianites with only their voices. In God, Gideon was able!
God knows our weak nature and loves us anyway. He feeds us regularly through his Word and the sacraments to strengthen us and refocus our wandering eyes. We don’t need to depend on ourselves or our own strength or specialness. God does it all for us. He saved us, once and for all, on Calvary’s mountain. Whenever and wherever we are exposed to his Word, the Holy Spirit is hard at work in our hearts, changing them. God will do his work. We don’t need to be amazing, special, or strong by our own might. We need only to be his. In the safety of his strong arms, our weaknesses don’t matter. He will hold us up. Beyond that, he will work in our hearts and lives to accomplish his great purposes. In him, we are as able as Gideon and the heroes of the Bible. In him, we can do whatever he has called us to do.
Praise be to our God who is able and strong! May his strength be shown in our weaknesses.
Sunday, October 2, 2011
An Obedient Heart

I recently read a devotion* entitled "Sippy Cup Trust" in which a mom talks about how her little son became panicked whenever he dropped his sippy cup and could not get it by himself. He would begin to yell and cry until she gave it back to him. If she took a few minutes to give it to him or had to do something else first, his panicked yelling and crying would become louder and louder. She would reassure him that she would get the cup in a minute, but he would begin to flail his arms and legs into a tantrum. She often found herself thinking, "Doesn't he know I see it fall? Doesn't he hear me when I say that I will get it? Why can't he trust that I will do what I say?" Over time she realized that this struggle with her son paralleled the struggle that she was often having with God - not remembering that He sees all, not trusting that He will handle things better than she could, not trusting that He will keep the promises that He has given to her (and all of us) in Scripture.
A huge parenting struggle in our home has been that I have been wrestling (only figuratively of course) with my 5 year old for control in our relationship. She has her own ideas and is trying very hard to assert them. While we value her ideas and intelligence, Scripture makes it clear that in a Christian home, CHILDREN MUST OBEY THEIR PARENTS. I have spent a lot of time talking about God-pleasing obedience being 1) immediate, 2) with a happy heart, and 3) thorough. Simple compliance doesn't do the trick. It is my responsibility to teach her that she needs to be in the habit of obeying those whom God has put in authority.
As I thought about this family struggle in relation to the sippy cup devotion, it dawned on me that I was like the mom in the devotion. The struggle that I was having with my daughter was a picture of my current relationship with God! I have been wrestling with Him just as my daughter has with me! Knowing that God demands obedience from His children hasn't stopped my heart and mind from questioning and rebelling these past months. Sophia isn't being obedient to me in a God-pleasing way and I am not being obedient to my Heavenly Father the way that He wants me to. My brain knows that God sees all, that His word promises that His plan for my life is being carried out, and that I can trust him absolutely. But that same mind and my hurting heart are in rebellion.
I spend my time trying to teach my precious child about obedience, but how do I – God’s precious child – learn to be more immediately, cheerfully and thoroughly obedient to my Lord? First, I look at who I am. I am a sinner and because of that I cannot obey God. My natural, sinful will is to disobey. Yet through saving faith in Jesus, I have been washed clean. The Holy Spirit is dwelling in my heart. In thankfulness for Jesus’ saving death and with his Holy Spirit dwelling in my heart, I arise daily with the desire to obey my Heavenly Father. As I read God’s Word and spend time in prayer I come to know my God better. I understand WHO my God is and what His good and perfect will is. My will begins to be more and more in line with the will of God.
If I try to think of good examples of Christian obedience, the apostles are some of the Bible folks who come to mind. In Matthew 4 we are told that when Jesus said, “Come follow me” the disciples “at once … left their nets and followed him.” THAT is God-pleasing obedience. They didn’t hem and haw. They didn’t check their accounts to see if they could afford it. They didn’t even go home and consult their families. They obeyed IMMEDIATELY! That is an amazing example of God-pleasing obedience!
David, too, is an example of obedience. Can that be? Can an adulterer, murderer, and liar be a great example of obedience. YES! Although David was definitely all of those sinful things, through faith in God he was also obedient. David repeatedly had the opportunity to harm or kill his assailant, King Saul, but he did not out of obedience to God. David’s obedience shows that he placed his full trust in God. Even in the desert David sang to the Lord, “I love you, Oh Lord, my strength. The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge.” (Psalm 18:1-3) Knowing that David, full of sin that was plain to see, was also a “man after God’s heart” and at many times in his life was very obedient to the Lord helps me to see that I can be obedient as well.
David yearned for the Lord. He talked to the Lord. The disciples spent their days and nights with Jesus – listening and learning. THIS is how I can become more obedient to my Lord. Did David and the disciples have moments of doubt that led to disobedience? They certainly did. God shares some of these moments of weakness with us in Scripture. He doesn’t share them with us just so that we can wipe our brows with a big “WHEW, they were sinful too!” of relief, but to help us see that God works in, through, and despite our mistakes. Does our disobedience and lack of trust make things harder in earthly life? Often it does. If you look at the lives of Bible believers, you will see that is the case for them too. David sure made his life harder when he had an affair with Bathsheba and then fixed it up with murder. Jonah ran from God and God saved him from drowning. Spending a few days in a fish’s belly can’t have been easy though. Maybe immediate obedience would have been easier?
Ever since she began afternoon kindergarten, Sophia is exhausted in the evenings and finds many reasons to be upset. One night as we were sitting down to a dinner of salmon and brussel sprouts (both of which Sophia actually loves) she came to the table crying and yelling that she wanted to eat a sandwich for dinner and WOULD NOT eat anything else. My patient husband filled her plate with the food that was being offered and got her to be quiet, pray, and eat. By the third or fourth bite, the crying seemed to be a faint memory (to her!) and with a big smile on her face she said, "Papi, I love salmon." How much easier, for Sophia and all of us, wouldn't it have been if she could have been obedient from the beginning. If my daughter's thoughts had been obedient, her behavior would have looked completely different. God-pleasing behavior is a reflection of God-pleasing thought.
So where does that leave me- the mom of a child with special needs who often feels that life is just not what I want? In thankfulness to my Lord and out of love for Him I want my thoughts to be obedient to him. And yet, I want my son to walk and talk. I want to have a larger family. I want typical sibling relationships for my daughter and I want my son to live a long, healthy life that includes things like marriage and children. I want an earthly life for my family that looks different than than what I have been given. This whole “special needs lifestyle” of adaptive equipment and medical interventions makes me want to run away like Jonah.
I look around me and it seems that most of the families we know get exactly what I want. They don’t even have to try. They have healthy baby after healthy baby. Their lives aren’t revolving around adaptive equipment, hospitals, and therapies. How do I bend my will to God’s in this most difficult thing? How do I trust my God who has allowed things into my life and my child’s that I am not particularly excited about? Knowing that He promises to work through them definitely helps, but just knowing doesn’t take the rebellion out of my heart.
The good news for me is that just like Sophia has a patient father who works her through her disobedience, I have a heavenly Father who describes himself as a shepherd who rejoices when one sheep re-enters the fold. This Shepherd loves me enough to work with me, through my bouts of disobedience. He forgives me when I wrestle with him and refuse to accept his will for my life. He offers closeness with himself to me in the pages of Scripture. Through the words of Scripture He comforts my wounded and rebellious heart. As He is doing this, his Holy Spirit is residing in my heart, making my will resemble the Lord’s – more and more everyday.
So to rid myself of my rebellion toward God’s will I can confess my disobediences to him and then immerse myself in getting to know His will better. I can bathe in the Psalms, drink the Gospels, and surround myself with His promises. The Bible tells us that His Word never comes back empty. That applies to outreach and nurture. When our hearts are nurtured in God’s Word, His Word will work on them.
So today let us pray, as the parents of children with special needs, that whatever is causing our hearts to rebel against our God will be soothed with God’s Word. May we look to Him to ease us out of our disobedience. May he inhabit our hearts and make them His dwelling place. Our actions will show this indwelling and our hearts will become obedient.
*The Heart of a Mother
Compilation by Wayne Holmes
Bethany House Publishers, 2003
Sippy Cup Trust by Tamara Rice