Sunday, December 27, 2009
1) Originally posted June 21, 2009: Dads are Vital to Special Needs Kids!
2) Originally posted July 12, 2009: Some good advice on what to do with the inevitable looky-loos.Smile and say hello. This may give them an awareness that they are staring and that you've noticed. I love it.
3) Originally posted August 2, 2009: ...beyond school, "What do you want to be when you grow up?" perhaps a conversation starter for you and your special needs child. I think at last report our daughter wanted ME to grow up to be a firefighter...I'll have to see what she says now...
4) Originally posted August 23, 2009: I have been curious for some time how autism and other special needs are affecting developing countries. This post on Hopeful Parents answers my question and shares about an organization that is directly working with parents in these countries to help them learn strategies to help their children. Amazing.
5) This is a new one, a link to a You Tube video a friend of mine posted on Facebook. It's not truly special needs related (except that it uses augmentive communication technology, I guess) but it is FUN, and everyone deserves to have a little FUN sometimes. Besides, the message is important...He shall reign forever and ever...even in 2010!
Happy New Year!
Thursday, December 24, 2009
Monday, December 21, 2009
Friday, December 18, 2009
- Down Syndrome occurs in 1 of every 800 live births.
- Childhood Leukemia occurs in 4-5 of every 100,000 children (ages 0-14)
I'm sure I could go on and find other disorders and diseases to compare rates with, but:
- I don't particularly want to get into an "us vs. them" stance here. It's not that I feel autism is more important than these other medical issues (Leukemia, after all can be fatal...)
- I don't really want to make it into a numbers game.
I do have two objectives in mind in highlighting this news story:
- First, although the rate of occurrence of autism is so high, by and large people do not realize how increasingly common it is. I recall having a conversation with a friend who is thinking about starting a family rather later than usual and one of her main concerns with the increase in Down Syndrome among mothers over the age of 35. When I pointed out the statistics of Down's being 1 in 800 versus autism being 1 in 150 (this was several months ago) she was surprised at the latter. Just remember 1%. Theoretically when looking at a group of 100 children, chances are one of them has some form of autism.
- Second, although the rate of occurrence of autism is so high, most people do not know what it looks like or what it means. Part of this is because each person with autism is uniquely affected by the disorder, so our usual attempts to put people into neat little pigeon holes doesn't work very well. However, in my opinion the other reason we don't recognize it (and I think it leads to later diagnoses) is because we have over-simplified it a bit. Everyone knows "the signs": child doesn't smile, doesn't babble, doesn't interact, bangs head/flaps hands, etc. The truth is it doesn't always look like this. I like to look at four developmental areas related to autism:
1) Language delay, sometimes with echolalia – sometimes
language delay occurs for other reasons, but especially if it occurs with echolalia there is cause for concern. (Can be observed as early as 18 months)
2) Sensory integration – overly strong or weak reactions to visual, aural, oral, tactile, olfactory or movement stimulation, and/or difficulty manipulating one’s own body. (Can be observed as early as 2-10 months)
3) Perseverative Play – Playing with toys in strange ways and (sometimes) for long periods of time. Spinning, lining toys up, looking at things from a funny angle, banging or throwing. (Can be observed as early as 9 months)
4) Social interactions – Difficulty learning the invisible rules of social interaction. Please note that many people with autism enjoy being around other people, and in fact in some cases overly depend on the stimulation that attention from peers and authority figures provides. Just because they enjoy being around people does not mean that they understand easily how to interact with others, especially peers. Subtle complexities of sharing, waiting for a turn, using words to say what you want, and asking for help when a mistake or problem arises, must be explicitly taught and not just learned through the usual school of hard knocks. Most of this is hard to
observe until age 3-4 years when children begin to spend more time in social settings with peers unaided by parents.
In my opinion if a parent asks a doctor about any one of these areas of development, the doctor should ask about the other three, and if there is reason for the doctor to be concerned about two or more of these areas then a referal to a specialist should be written. In particular, the first three categories which are easier to see in a younger child should be highlighted in any developmental screening performed by a doctor.
Sadly, the increase in autism can be greatly misunderstood as well. I believe this article may be an example of this, but I'll let you be the judge.
This is a much longer post than usual, and I'm not sure I've even scratched the surface of what I wanted to say on the subject, but that number 1 in 110 is heavy on my mind. I hope by reading this you will also become more aware of the challenge we all face in that statistic.
Tuesday, December 15, 2009
Gentleness is defined as "being moderate in force or degree so that the effects are not severe." (Encarta Dictionary) It was recently explained to me as the correct center of the anger spectrum from never being angry on one end, to being angry all the time on the other end. In other words, it is knowing when it is appropriate to be angry and handling one's anger appropriately. It is probably the fruit I need most to ask the Holy Spirit to provide in my life.
Some examples of God being gentle from scripture are:
- I Kings 19 - After being present for God totally defeating the prophets of Baal (I Kings 18) Elijah gets a nasty note from Jezebel and decides he better run for it. Early on he wants to give up and God sends an angel to him with food and drink (twice!). He runs some more, then decides to hide in a cave. God asks him what he's doing there and Elijah explains how bad things have gotten to God. God invites Elijah to step out of the cave and watch him pass by. Big wind comes, then an earthquake, then a fire. After the fire came a gentle voice. God again asks Elijah what he's doing there and Elijah complains some more. Then God tells him to go back and get ready to retire, passing on his ministry to Elisha. When Elijah was ready to throw in the towel in spite of having witnessed one of the most dramatic miracles and victories of all time, God could have blasted him with the wind, or the earthquake or the fire. Instead He uses a gentle voice to tell Elijah his next steps, though at least one of those would be somewhat painful - laying aside his prophet mantle. God says the hard words, but He does so in a way that is easy to accept.
- Matthew 11:29,30 (NIV) - "Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." This is a promise to the weary and burdened. Jesus offers us His yoke. Please note that there is a yoke, but it is an easy yoke, and it is controlled by our gentle Lord.
Saturday, December 12, 2009
- Take a pledge to stop using "retard" and other words that are hurtful to individuals with special needs. My personal nemesis is "crazy" it slips out before I can realize how it might sound to a person struggling with a mental illness.
- If you slip up, apologize, and start over.
- If you hear another person using derogatory labels, call them on it (politely) and explain how damaging this kind of language can be. Tell them about We R Above if you're not sure how to put it into words yourself.
- If you use social media like Facebook or Twitter, spread the word around.
I realize that any label can be turned into a verbal slap. I've seen people using the usally PC "special needs" inappropriately, too. We need to guard our tongues, and our pens (and keyboards) and remember to consider others' needs and feelings above our own.
Wednesday, December 9, 2009
Sunday, December 6, 2009
2) As a follow up to Thanksgiving, check out these thankful moments gathered by Autism Speaks from parents, grandparents, teachers, therapists and others who love someone with autism. Warning: you may need some tissue handy.
3) These tips for supporting autistic family members through the sometimes hectic holidays seemed generally helpful. We're trying the stepwise decorating idea just out of necessity...it took us so long to find everything yesterday that we didn't have time to set it up. Today the tree is up, but only half lit. You get the idea.
4) On a related note, here is a gift guide for special needs children ages 1-5. Over 5? - sorry you're on your own. Wait a minute!! Not fair!! Seriously - if you know a good resource for older children please leave a comment with a link below!
5) Not exactly Christmas music, but an interesting idea for letting special needs children experience the ability to make music.
Thursday, December 3, 2009
There are so many things that we need to be gentle with. It seems that we mostly focus on the physical and external, the material and the personal. We strive to teach our children early that hitting is wrong, that we need to use gentle hands. We need to remember that there are tender hearts and feelings as well. We have noticed with our son that he is much more sensitive to scolding than the girls are. Often if I say no to him even in a conversational tone his little feelings are crushed. Although I still must train and discipline him I will need to remember his soft heart in this area.
I recently heard a speaker say that gentleness is the quality of knowing when to be angry and handling your anger appropriately. If there are two unhealthy extremes: being angry all the time and never being angry, gentleness is the pivot point of perfect balance. It stuck in my brain because I've been asking God to work on my anger for the last year or so. Amazingly He has, although there's definitely still stuff to work on. What is real and true is that my daughter and her needs are the tools that He is using to make this area of my character what He wants it to be.
So who is teaching whom about gentleness, anyway?
Monday, November 30, 2009
- the tasks were things that she had already shown a great deal of interest in
- the rewards were things that we knew she would enjoy and look forward to earning
- the choice was hers - to do the task or not, to save the stars or not, she had a great deal of control over the program.
Friday, November 27, 2009
Tuesday, November 24, 2009
You could pick any story from the Bible, and find at the root that it teaches God is faithful. He is always true to His plan to bring us into fellowship with Him. First by creating us, then by withholding judgement until He could make a way to redeem, sanctify, and ultimately glorify us. Every moment of history points to His unending desire to know us and to have us know Him.
Lamentations 3:22-23 (NIV) says, "Because of the LORD's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness." This verse inspired the great hymn, "Great is thy Faithfulness" which I always find to be so encouraging.
Great is thy Faithfulness, O God my Father
There is no shadow of turning with thee.
Thou changest not, thy compassions they fail not
As thou has been, thou forever wilt be.
Summer and Winter and Springtime and Harvest,
Sun, moon, and stars, in their courses above,
Join with all nature in manifold witness,
To thy great faithfulness mercy and love.
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide.
Strength for today and bright hope for tomorrow
Blessings all mine, with ten thousand besides.
Great is thy faithfulness!
Great is thy faithfulness!
Morning by morning new mercies I see
All I have needed thy hand hath provided
Great is thy faithfulness
Lord, unto me!
And what better time of year to consider just how faithful God has been to us. Considering how faithless we sometimes are, and yet he continues to pour out on us His great love, His ever new compassions, His own hand providing what we truly need. I hope each of us will be able to reflect on His faithfulness and at the same time understand that He wants to impart that character onto us, His children.
Saturday, November 21, 2009
Some action steps to consider:
- If you live in the San Francisco Bay Area consider donating a coat to these students. Gently used or new coats are welcome. Donations can be delivered to George Miller Center, 2801 Robert Miller Drive, Richmond, CA by December 19. For more information call 510-374-3981 or send an e-mail to clam at arcofcc dot org.
- If you don't live nearby, look around for other programs that work with Special Needs students and want to encourage them to serve their community. Support a program that is already in place or help get one going.
- If you are a special needs parent, consider how you can encourage your own child to serve his or her community. A couple of years ago we went to an event where we helped make care packages for needy children. At that time the simple act of putting the package together and drawing a little picture for the recipient was about all my daughter could understand, but it was a start. She still tells me sometimes that she wants to give things to someone who doesn't have one of those (sometimes it's a sibling, though, so I'm not sure she understands the idea of charity :-). I'm sure this is an area we'll continue to work on, and the upcoming holiday season offers a great opportunity to do so.
Wednesday, November 18, 2009
The reason I bought the book is because I have always found it challenging to play with my daughter. That may sound kind of shocking to some people. She has always been very content to play on her own, so if I have projects to keep my busy (and usually I do) a lot of time can go by before I remember to check on her. It is an intentional act on my part to invade her space and enter into play with her. I had hoped that reading this book might make it easier to break down the walls. What reading the book (or part of it) did is confirm that the walls need to be broken down and it does take effort and it may not ever be "easy". My experience has taught me that consistently making that effort makes is easier to continue the effort and, gradually has meant that my daughter will make more of the effort from her side of the wall.
The other day she was so eager to "play" with me. She just wanted me to accompany her in picking some berries from a bush in our back yard and crushing them with one of her sandbox toys to make "applesauce". Recognizing this as a major step in our relationship - to have her invite me to join a pretend play activity with her - I knew I had to respond to that effort. The other projects were set aside...this was important!
So if you need some tools to start chipping down the walls, this book is for you!
Sunday, November 15, 2009
Holidays/Family or Social gatherings in general:
1) It seems like the holidays often make a perfect storm for hurtful comments and the ensuing havoc on personal relationships. This article helped me think about some ways to respond and offers advice on what to say "instead" of hurtful (even if well-intentioned) comments.
2) One thing I'm thankful is around for my child today: Matteo's Dream playground, right here in our area. A while ago I blogged about a park like this up in Seattle. A friend of mine who helps organize Buddy Play invited us to attend an event at Matteo's Dream to make me aware of this special park just 20 minutes up the road for us. We went and of course my daughter loved it. She would live at a park if we'd let her, and one of her best buddies was there to boss around. One point that I hadn't considered before about a completely accessible playground is that parents or grandparents with physical challenges can more easily interact with their children, too. I saw a grandmother there with her motorized scooter and she was able to keep tabs on the child she was supervising.
3) One thing I'm thankful will be around for my child in the future: Capernaum, a ministry of Young Life that reaches out to special needs students. A friend of mine told me about this ministry some time ago, and this article jogged my memory. This story is specifically about a Capernaum group starting in Tempe, AZ. You can find out more about Capernaum at large here.
4) Some quotes and ideas about keeping the focus of Thanksgiving on gratitude, not turkey. I do not theologically agree with all of the sources of these quotes, or even with all of the quotes, but the goal of remembering that Thanksgiving should be about giving thanks is key.
Preparing for Christmas:
5) This year Advent begins on November 29 - the Sunday after Thanksgiving. I think Advent can be an excellent way to keep the focus of Christmas on Christ rather than the presents under the tree. This article gives some suggestions of ways to celebrate Advent with your child. I think they could be easily adapted to special needs children. I'm hoping to try one of the calendar ideas with my daughter. I'll let you know how it goes...
Thursday, November 12, 2009
My daughter has not yet accepted this truth as her own. This is one of the primary reasons that I started this blog. I have big questions about how to impart faith to her in view of her learning differences. She is immersed in a community of faith. We attend church each week. We are working on making Sunday School a place that will meaningfully communicate God's truth to her. At home we pray before meals and before bed. I have recently asked her to pray for specific friends or problems, and I try to point out miraculous things we encounter along the way (like the day we found important confidential papers that had fallen out of our stroller about six hours earlier). I hope for the day that she will ask more questions about who God is, why Jesus came, and what it can mean for her. Since she just recently started asking even concrete questions I sometimes wonder if I should just be initiating the conversation more, but if she isn't asking is she really ready? The debate just rages in my mind until I entrust even this significant piece of her future to the only One who already knows.
Still this child can teach me some important things about faithfulness. Regarding the conviction of the truth I can learn a lot. My daughter is among every other quality very truthful. I don't think the idea of falsehood has even entered the edges of her understanding yet. Even when it would serve her own interests (of which she is keenly aware) she tells the truth. When I hear one of her siblings crying and I suspect she has had something to do with that I can ask her, "Did you hit him?" and she will say "Yes, I hit him." and off to the time-out area we go. She is also pretty firmly fixed in what she thinks is right. There is very little gray in her universe. Items are liked or not liked, rules (though challenging to obey) are powerful, and friends are forever. While this steadfastness can lead to problems - e.g. in a sea of children insisting on playing with only one because "she's my friend' - it can also be inspirational to watch. Do I speak truth with so little self-consciousness? Do I hold fast to what I believe is right? With God's graceful provision I can!
Monday, November 9, 2009
My daughter just started Kindergarten, and although she is very verbal (non-stop sometimes) her conversation skills are not typical. Between pragmatic speech delays and social skill delays my idea of how her days at school were going was very vague. So talk to the teacher, you might suggest. Our Kindergarten classes have 20 students, which means 20 sets of parents who jockey for the teacher's attention. Because of my daughter's support programs at school, we only see the regular classroom teacher at drop-off, which halves our opportunity to ask questions. There's also a resource room teacher that we need to talk to. To complicate things even more, some of the information we need to know is whether or not there were any negative behaviors during the school day and how they were handled. We have learned (the hard way) that such issues should not be discussed when my daughter is present, even over the phone. In short it was very hard to know what was going on at school and how we could work with the teachers and other school staff to support our daughter.
One of our friends suggested using a "communication book" where we could write information for the teachers and they could write information for us. I spent a little bit of time researching things on the Internet and also picked up some ideas from an IEP (Individual Education Plan) workshop that I attended. None of them seemed to fit our exact situation. I wanted to meet the following criteria:
- Something that would be quick and easy for the school staff to do every day.
- Something that would give us information on both positive and negative behaviors.
- Some flexibility in case school staff needed to add important information.
- Something with a hint of how she was doing in terms of academic work.
Here's what I came up with:
I bought a cheap photo album with a cute girly cover. ($2) - the kind with plastic pages and clear pockets.
I made some slips of paper (some labeled with general classroom and some with resource room) that fit into the photo pockets. These say:
She earned __________ stars today.
She was put on timeout ___________ times because ____________.
She finished all most some of her work today.
To clarify - the stars and timeouts are defined pieces of her behavior support plan. The key is that I'm learning information on how well she did and if any problems came up.
I put in dividers for each day of the week, including Saturday and Sunday. On weekend days I write a brief note about things we did and any behavior issues that occurred at home and how we handled them. Each weekday I make sure the book gets into her backpack and at drop off I try to make sure I see her hand it to a teacher or aide. Each day the teacher or aide fills in the blanks or circles the choices as appropriate. If they choose to do so they can add their own thoughts at the bottom. When I pick my daughter up quite often she hands it directly to me and I flip to that day to see how many stars she earned. I beam at her and say, "WOW, X stars!, that's great sweetie!!". I also silently read about timeouts and can judge from her attitude at the moment about how I might need to proceed with the rest of our day, but I do NOT comment aloud on this piece. It is enough that I am aware of it. If I see any trends developing I will be able to contact the teachers for more information or to address my concerns.
This simple tool has made a huge difference in my confidence. I believe it has been key to keeping my daughter on track behaviorally. I appreciate the school staff's willingness to do this each day.
How do you find out about your child's day at school?
Friday, November 6, 2009
I found it.
This story is one that many of us can only hope will be played out in our children's future. You can find text, comments, and video that honors a boy with special needs for his faithful work as the manager of his middle school football team. I don't know how you remember middle school, but I recall it as a place where differences are unwelcome and ostracized. This school, this team does not fit that mold. Perhaps it is due to the strength and mentoring of the coach. Maybe it's the supportive mother. Maybe they are just good kids. No matter what it is you can see in the video how the boys of this team truly accept Matthew and enjoy being with him. I don't think it's magic...I think it is good character on the part of each person in the scenario.
It reminds me of another story I've seen on facebook several times now about a high school basketball team with a similar attitude. You can see that video here. Prepare to cry tears of joy...even if you've seen it before.
These kids, overcoming all obstacles to find a place of acceptance and happiness, are a reminder to all of us that the good is still out there and we need to find it and help it multiply.
Tuesday, November 3, 2009
The futility of that last point is obvious. Throughout the Bible we are told that God has an accurate view of who we are. Just two examples that come quickly to mind:
- Psalm 103:14 (NIV) - "...for he knows how we are formed, he remembers that we are dust."
- Isaiah 64:6 (NIV) - "...all our righteous acts are like filthy rags..."
I cannot win God's favor by any act of my own. Even my good stuff is like a well-used dust mop in His view, and because of my human frailty I will not always be able to do the good stuff. However, He still views me a a precious daughter not because of what I have done, but because He has made me good through the work of Jesus on the cross, and through the continuing work of His Holy Spirit in my life.
In John 16 Jesus tells His disciples that it is for their good that He is going away so that the Counselor (the Holy Spirit) will come (verse 7). He goes on to explain that the Holy Spirit will teach us the standards of sin and righteousness, by telling us what God wants us to hear.
I am convinced that I cannot meet any measure of goodness on my own. I must learn to rely more on God's Spirit to show me the way to go, and rest in His assurance that He sees me as very good.
This post is part of the Moms' 30-minute Blog Challenge at Steady Mom. It is also the latest installment in a series on the Fruit of the Spirit (Galatians 5:22-23, see left) learned from our children and from the Bible. You can see previous posts in the series by going to my "blog schedule" page and looking through the Tuesday and Thursday posts.
Saturday, October 31, 2009
I've posted before about the use of assistance dogs for children with autism. If and when we embark on the adventure of dog ownership I would love to find an animal that is suitable for use as an assistant, or at least one that is therapeutic, with a calming and regulating effect. All of this thinking about dogs made me really excited when I found this link to a story about the Lions service club which is now training service dogs for children with autism. The Lions have been involved with training service dogs for visual and hearing impairment for 25 years, but due to increasing rates of autism they have added a program to train dogs to meet this special need. You can check out the website for the Lions Foundation of Canada Dog Guides here.
According to their website there are plenty of ways that you can get involved:
- Make a donation - The Lions Foundation receives no governmental assistance.
- Adopt a puppy - Literally or figuratively. For a donation of $100 you can help defray veterinary care for a future guide dog and receive a certificate commemorating your assistance. Future guide dogs also require special training and socialization in their first year and the Lions Foundation uses foster families to provide that environment for their dogs. You can learn more by looking at the...
- Opportunities page - where both paid and volunteer positions are listed, along with application form links.
- Also check out the wish list.
Wednesday, October 28, 2009
Sunday, October 25, 2009
1. Feeling crafty? This spider (or rainbow kitty) from Magic Marker Monday on 5 Minutes for Special Needs looks pretty easy to make. I'm thinking googly eyes instead of the tea light even easier and just as cute. The original version is here.
2. Lots of tips, costume ideas, safety notes, etc. I especially liked the wheel chair costumes link. Fred Flinstone - how fun!
3. As Christians, Halloween can be more than a bit controversial. To attempt to represent several sides of the issue, consider the scholarly approach. Or...
4. Perhaps the "no harm done" approach. Or...
5. My personal favorite, the turn it on it's head approach. [You'll need to scroll down quite a ways to the November 3, 2008 post, "Halloween on Oak Street"]
Friday, October 23, 2009
Once again I find myself in the midst of a mystery. How can a child with behavior problems be teaching me about goodness? This requires a little research. Let's go back to the Greek and see what Paul is really talking about here. The Greek word is agathosune (ag-ath-o-soo-nay) and guess what it means: goodness, virtue, beneficence. It comes from the word agathos (ag-ath-os) which means good, benefit, or well. All right then, what exactly do we mean by the word good. In this world of moral relativism, what does good mean, anyway? For such a small word, it seems it is hard to wrap it in a nice neat package. According to the En Carta World English Dictionary (1999) there are 33 uses or definitions! Here are three that jumped out at me when viewed through the prism of a child with special needs:
When used as an adjective:
- indicating that something is approved of or desirable
- having the appropriate qualities to be something or to fit a particular purpose
- worthy of honor or high esteem
Goodness is not a characteristic generated by the individual. Rather it is a gift bestowed by the observer. To be specific: in the end it does not matter how many tantrums my little girl had today, the key is how I view her. Do I approve of her, find her desirable, remember that she was created for a purpose, and consider her worthy of esteem? These are my choices, not hers. I can choose to call her good when I remember how God looks upon me. Every person bears His image. Each of us is marred in some way by sin - our own and others' - but when He looks at us He sees Jesus. God knew that we could never be "good for" our debt of sin...we could never pay the penalty of not meeting His standard of "good - having or showing an upright and virtuous character" all the time. So He sent Jesus to cover our debt, and when we accept His payment He no longer sees the debts, just that Jesus paid it all. I can choose this same attitude toward my daughter. I can choose to see her goodness as a fellow image bearer of God. This really could change everything.
Monday, October 19, 2009
- Do something significant just for you at least twice a month. I started attending my writing group again each month, and I also developed a list of deferred self-care items that needed to be addressed. I've prioritized them and intend to deal with one item on that list each month until I'm back in the habit of taking care of myself.
- Find windows in each day that you can slow down and regroup. Today I ran to the grocery store to pick up a few things and dropped off the dry cleaning. My husband was able to keep an eye on the kids while I was gone. This always makes the errands go a little faster, but at the end of the grocery run I realized I had been going full tilt all day long and I really needed to take an extra minute or two to prepare mentally for the rest of our evening. I popped a new CD into the car stereo and nibbled on a small treat I had succumbed to in the check out lane. It wasn't much, but those few minutes of just letting myself slow down rather than racing home to jump into dinner preparations, laundry, and dishes was key to handling all of those tasks with more grace and humor.
- Set boundaries on activities that are draining. The last few days have been very hectic for our family - school events, church events, swimming lessons, meetings, etc. which has been leading to short nights, and long, busy days. When I mentioned that tonight was a blog post night my husband suggested that I should take a sanity break...how fitting for my theme! This blog, however, is a commitment and I don't want to get off my three day schedule, so I decided instead to take up Steady Mom's 30 minute blog challenge. I usually write rather quickly but then spend time tweaking and fine tuning until everything is just so...who knows how much time I usually devote to a post, but Jamie suggested setting a timer to 30 minutes to put a definite end point on "screen time" and increase "face time" with those we love. In my case I think the increase will be in pillow time!
- Take care of your physical self. When was the last time you had an eye exam, a dental check-up, an annual physical? Are there aches and pains you are ignoring until (fill in the blank) happens? I spent 5 hours in the dental chair last week because of that kind of procrastination. Lesson learned.
- Take care of your spiritual self. When was the last time you had a steady quiet time with God, a fixed appointment with Him to read the Bible, pray, listen to the Holy Spirit? I've pretty much always struggled to keep faithful in this, but am finding it an essential component of my day now that I've re-started the habit.
Must close...my timer is about to beep and I have to at least spell-check...you get the idea. You will only give excellent care to your special needs child if you are taking sufficient care of yourself, too. It's important. Make it happen!
Friday, October 16, 2009
Tuesday, October 13, 2009
This fifth fruit of the Spirit is a hard balancing act, if you ask me. On the one hand we want to be loving and generous toward everyone around us, and on the other hand we don't want to be foolish or careless in bestowing resources where they will be misused or abused (casting pearls before swine). The verse above, to me, is an amazing picture of this. God's kindness is bestowed on us at a time when we need to repent, but in the process of receiving God's kindness we want to change. Let's look at the context:
You, therefore, have no excuse, you who pass judgement on someone else, for at whatever point you judge the other, you are condemning yourself, because you who pass judgement do the same things. Now we know that God's judgment against those who do such things is based on truth. So when you, a mere man, pass judgment on them and yet do the same things, do you think you will escape God's judgment? Or do you show contempt for the riches of his kindness, tolerance and patience, not realizing that God's kindness leads you toward repentance?" Romans 2:1-4
There seem to be three key thoughts here. First, when we judge others we condemn ourselves. Have you ever noticed that the things that annoy you in other people can often be traced back to something you do yourself? There are several things that I get frustrated with in my daughter only upon reflection to realize that I do the same thing, simply in a more grown up manner. She procrastinates undesirable tasks until they are unavoidable sometimes forcing a confrontation. Anyone else around here doing countdowns at their house? It wears me out. Yet here I sit at a desk filled with papers that probably should have been acted on, filed, or discarded weeks ago. Who, indeed, am I to judge?
Second, God knows who we are. He is the final, honest, all-knowing judge and if we see something we don't like in someone else, we'd best ask Him to examine our own heart as well. Even if that particular sin, vice, attitude, habit, or character flaw isn't present, there is undoubtedly something else lurking there. I have a theory that the longer one walks in paths of faith the more subtle the lurkers are. Things that a new Christian would not even notice can be the biggest issue that an older saint is working on with the Lord. In His eyes, all things that are not holy and from Him are sin and keep us from Him. He is not pleased and He cannot tolerate the presence of such things in the hearts of His beloved and so...
He is kind to us. At another time in my life I might have finished that thought differently, but there it is. He wants us to change, to become ever more like Him, and so He demonstrates kindness. While we were still sinners, He died for us. (Romans 5:8). He guides us into all truth. (John 16:13). He patiently waits for us to come to repentance. (II Peter 3:9)
Since God's spirit can provide this fruit of kindness in me if I rely on Him, the effect I should see on others is that they, too, will be drawn to repentance as I live out the kindness I have received toward others.
Saturday, October 10, 2009
Here's how you can help:
Visit adventureforautism.com and click on the Help AfA post-it-note. Biel welcomes a night in a warm home rather than sleeping in the tent he carries on his bike. A night in a hotel room is appreciated, too. AfA also suggests organizing an autism awareness bike day if Biel rides through your area. You can check out his route at the above link.
Visit L'Arche an organization in Canada (and worldwide) that works to integrate people with disabilities in society and Pathfinders for Autism a parent-initiated organization based out of Maryland. The funds Biel raises will support these two organizations. Check them out. See what else they might need.
If nothing else, help spread the word. Our media market hasn't picked up Biel's story yet. With all the doom and gloom we're hearing these days wouldn't you like to hear some good news? Tell all your friends on facebook or twitter to join the adventure.
Wednesday, October 7, 2009
I read in a book once that having a child with special needs is like
getting on an airplane for a trip. You think you are going to Venice, but then
the stewardess tells you you have landed in Holland. Well, you can spend your
time crying for the gondolas, or you can get out and enjoy the windmills. It's
not quite what you had expected, but it is beautiful all the same.
So I call him my Dutch boy. To remember that windmills are as beautiful as
He fills my world with wonder and unbelievable joy.
Sunday, October 4, 2009
Two reminders to be careful about how we use our words:
"Why it Hurts" by Renee at 5 Minutes for Special Needs
"When Adults Use The R-word" by Tammy at Praying for Parker
And another about how hard it can be to know whether to disclose in advance, or explain afterward:
"To Tell or Not to Tell, That is the Question" by ShashK at 5 Minutes for Special Needs
An inspiring story about overcoming prejudice and social barriers through education:
"Speech pathologists, other educators bring autism expertise to Bosnia" by Theresa Harrington in the Contra Costa Times
And finding serenity:
The 12 Steps and Autism at Understanding my son
Thursday, October 1, 2009
For example, my daughter is engrossed by the idea of birthdays. I may have mentioned that this is one of her favorite pretend play scripts. I've had several "birthdays" this year, and we must always have special pretend food, the birthday song, and lately also birthday crowns. Although she clearly enjoys birthdays, there are some finer social points that we've had to explain in great detail. I've listed some of these below.
- When it is her turn - When she was younger we wrote a social story about birthdays explaining that she only gets one each year, but that it is still fun to help friends celebrate.
- Choosing the gift - that it should be something the birthday person will like, and that she will not get a gift every time we give one to someone else.
- Not being the center of attention - letting the birthday person choose how to celebrate, open gifts, blow out candles, be sung to, etc.
- Social niceties during the party - saying please/thank you, sharing, taking turns, saying goodbye to the host(ess).
The other piece of kindness that having a special needs child highlights is how unique we all are, and how each of us deserves some level of individualized care. The best example of this that I can share here is the contrast in interactions between my daughter and two of her friends. My daughter and one of her friends were riding their bikes around on our patio and he was having some trouble navigating some of the turns and obstacles. Because she was following him she would have to stop while he worked his way around the tree branch or the bump in the sidewalk, and when she tried to start again she would "grunt" a little at the effort of moving the pedals on her bike from a dead stop. He interpreted this "grunting" as yelling at him and became quite upset. She, of course, did not undertand why he was upset and continued to grunt and yell until we had to end the play time. The other boy can give as good as he gets in this regard - I have watched my daughter and this boy argue back and forth about whether or not bugs can talk, and if she gets loud he does, too. Unfazed. My point is that the subtlety of needing to treat one friend with more sensitivity than the other goes so far beyond my daughter's skill, and yet it has been a lesson to me. Am I sensitive to what other's need, or do I proceed with a cookie-cutter approach to friendship. One friend needs phone calls, the other hates phone calls but loves facebook. Am I flexible enough to work at meeting those needs rather than expecting them to bend to mine?
Kindness is other-focused, other-driven, and not mass-produced. I close again with a children's song that I learned when my daughter was just a baby. As I watch her garden grow I tend my own a little more closely.
Monday, September 28, 2009
We recently started using sign language (ASL) more after learning more about our daughter's various delays. It started by wanting to give her a hand motion to match each house rule that we wanted her to learn. She responded so well to this, and actually told me that the signs are helpful to her, that we've started signing even more. A good friend pointed me to the "Signing Time" videos, which all of our kids like watching, and they are all learning the signs. We've also checked out a few books from the library for additional signing vocabulary. If nothing else it is a fun and educational activity that all of my children enjoy, YAY!...but there seems to be more to it.
Especially since I'm just learning to sign again (dredging up some quite rusty memories from my high school era) I do not sign with my kids all the time, but I am strategically learning signs to accompany challenging and/or important conversations, like:
- enforcing the house rules
- talking about emotions (are you feeling happy, sad, grumpy, etc.)
- frustrating situations (need help?)
- mealtimes (more, done, please, thank you)
- play time (your turn, share)
- and story time (whatever words in a book that I know I try to practice those signs)
Friday, September 25, 2009
When I saw this story, however, I felt the need to comment. Again, in general I am pro-adoption. Our family has seen first-hand the power of attachment between an adoptive parent and their child. We know how God can use this modern arrangement to bring a child, or a parent, or both into His Kingdom. For a while the "thing to do" was to adopt a child from overseas. It is somewhat faster, less expensive, and can move children from an impoverished situation to one of relative wealth and ease. According to this story, the demand has out-paced the supply and international adoptions are now taking longer and costing more, too. What should the desperate-to-adopt parent do? Where should they turn? It seems the next big boom in the industry is special needs children. The recent celebrities who have followed this route have perhaps added some "glamorous" patina to the idea of adopting a special needs child, but it appears the uptick was happening before they got on board. Is adoption becoming such a consumer-driven process?
Some are concerned that the adoptive parents "don't know what they're getting into." I share their concern at some level -- except I also know there are plenty of biological parents who are not prepared for the challenges of special needs parenting (self most definitely included) and there is no "Now you can be a Special Needs Parent" exam. It's not like we're certified or anything...my concerns are at a different level, though currently they are only questions.
- Why is it a recent phenomenon? There have always been special needs children available for adoption. Why are they being adopted more now and not before? Is the motivation solely because the process can be so much more rapid? What does this say about the quality of compassion that is directing these decisions? What does it say about society's view of people with special needs?
- Which special needs are "adoptable" and which are still being set aside? I've heard there are "checklists" for which special needs a prospective parent is willing to take on. Is there a hierarchy of disabilities? If a generally misunderstood condition such as autism or some complex medical issue is present do the boxes get checked?
- Do these parents receive the support they really need? Adoption is a complicated process. Add special needs for the child and you have a doozy of a need for a support system.
Bravo to the brave hearts who are walking through this process. May God bless you as you join the ranks of special needs parents. May we as a society learn from your compassion that every child deserves the safety and security of a loving family.
Tuesday, September 22, 2009
In what ways does God demonstrate His patience to us? Two verses come to mind.
First, one of my favorite verses: "The Lord is gracious, and full of compassion; slow to anger, and of great mercy." Psalm 103:8 Although the word "patience" is not directly used here, the combination of grace, compassion, a slow anger fuse, and mercy adds up to patience. The perspectives that can keep me from losing my patience as a worn out mother include:
- realizing that my children need a break even if they don't deserve it (grace)
- seeing my children through eyes of love (compassion)
- dousing that anger fuse (mine is way too short)
- and with-holding consequences that don't fall into line with the first three bullets (mercy)
The other verse that came to mind is II Peter 3:9 (NIV), "The Lord is not slow in keeping His promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance." The verse is written in the context of refuting scoffers who in that day (approximately 65-68 A.D.) were saying that Christ's second coming was a myth; that He would not return to take His own and establish His reign. So just about 30 years after Jesus' death and resurrection the skeptics were already planting seeds of doubt. Now, 2000 years later how much more do we rely on His faithfulness? As Peter reminds us we must also rejoice in His patience. To continue to uphold the heavens and earth in His hand as He waits patiently for all who will come to come. What a picture of patience! Notice, however, that Peter makes this personal, "He is patient with you." What is He waiting for? Perhaps He is patiently waiting for me to be to be more patient.
Saturday, September 19, 2009
Consider the current economic environment. With double digit unemployment nationwide, and much higher in some states and cities, how much harder is it for young adults with special needs to find jobs they can be independent and successful in? Even normative adults are challenged to find work these days. Meanwhile, the special needs population is going to continue to grow as the number of autism diagnoses alone continues to climb. Kind of a special needs worker boom looming on the horizon. Should we just send them all home to watch TV and twiddle their thumbs or should we start now to develop job training programs and employer accommodation programs that will make it possible for special needs workers to be successful and productive. Maybe we could get ahead of the curve on this one?
I read this article at The Autism News today about "Men with Mops." You can read another article that gives more information here. Men with Mops is evidently a private business affiliated with Rutgers University's Douglass Developmental Disabilities Center. The idea of building a business that is centered around adults with developmental disabilities may be daunting to some, but consider what steps you could take in this arena:
* Encourage business owners to learn about special needs accommodations.
* If you are a business owner, look for ways to include a special needs worker in your model.
* As a parent begin early to consider what job skills your child needs to develop in order to find a suitable workplace in the future.
* Consider finding a Men with Mops equivalent in your area and offer to be a job coach, or help them recruit work opportunities.
* Advocate for job training programs and employer training programs in your area.