Checklist for SPD

Newly Diagnosed


This is a Checklist for families parenting a child that is newly diagnosed with SPD (or still flailing about!). It hope it empowers you to manage your child’s Sensory Processing Disorder instead of feeling like it is running the show.



1. Find a qualified, trained, experienced Occupational Therapist.

You may think you already have this step down, especially since your child was probably diagnosed by an OT. But, and this is a HUGE but, you truly need to find an Occupational Therapist that has not only been trained in sensory integration techniques, but one that is currently treating patients with SPD successfully.



There are many things that OTs continue to learn, and having an OT that is focused on sensory integration is key to your child’s ability to get the most out of OT now and in the future.



Did that scare you? That you might go back and forth – to and from OT? A great OT is there for you and your child as your child grows up (shocking to think your preschooler or Kindergartner will ever “grow up” but as it turns out, they will). You may find you go back to OT for many reasons; maybe you need a little help with something specific—like handwriting or social issues. A great OT that knows your child and family will be priceless for the rest of your child’s SPD journey.



2. Establish a Routine immediately if not sooner.

Routine is going to be your new BFF. Making things predictable at home for you and your kid will reduce meltdowns. Plain and simple: Less Meltdowns = More Calm. More Calm = Happier people. That’s the way it works, I don’t make the rules, I just follow them.



Routine means you need do the same thing, every day, at the same time. Don’t freak out. You can do this. It sounds like you are sacrificing a lot, and you are sacrificing the by-the-seat-of-your-pants style of living and parenting you may be used to. But it is time to be more organized – no running to the grocery store after you pick your kiddo up from school. No staying out late at a friend’s house when you KNOW your kid can’t handle it. This is about creating a schedule within the limits of your family. Those limits will get wider as your child gets older, but until then, let’s take your child’s world from being THIS BIG and bring it down to a more manageable this big.

Now, whatever you choose to do for your base routine each day (you need before school, after school and bedtime routines at a minimum in my experience) support your routine with visuals for your kiddo. This is especially important for young kids that cannot read, but valuable for all kids. Post routine schedules for everyone to see – including your spouse! My hubby wasn’t exactly thrilled with my new routine and schedule based living, but when he realized that I felt calmer (knowing there would be less meltdowns reduces myanxiety) and our kiddos felt calmer, he got aboard the Train. Chugga Chugga Woo Woo!



3. Establish your Sensory Diet immediately if not sooner.



Your Occupational Therapist will be your best resource for this to begin with. He/she knows your child’s sensory needs the best and can give you the right tools to use at the right time (we aren’t talking wrenches here, but info, ideas and activities).



This sounds daunting, I realize that. But, when your routine is in place, you will notice patterns of behavior: Every time my kid comes home from school he is overwhelmed and needs quiet chill out time, so I give him alone play time or TV with a heavy blanket (the proprioception helps my kid from getting *too* low); however, when he was in Kindergarten he came home WIRED and high high high, so we put him in a weighted compression vest for 20 minutes every hour until bed. Did wonders. Each kid is different—but they all have patterns.



Once you identify the patterns (journaling their behavior is an easy way to figure it out), share this with your OT and ask for ways to control your child’s “engine”. Once you establish the basics, you will be able to mix up what to do with your child and his/her “Sensory Diet” vocabulary will expand. You will also learn to be creative; a true Master of the Sensory Diet.



4. Find a Support Group.



Finding other parents that get what you are going through is necessary; note I didn’t say “optional” or “a good idea”.



This is crucial to your emotional health as a parent. Being the parent of a special needs child (Yes, SPD counts as “special needs”) means you are going to have a few extra bumps in the road. Establishing a support group early on is essential. And it isn’t just for you to vent, cry or otherwise find emotional support (although you will do those), it is also so that you have resources for tips on everything from school to travel to eating. The members of your group will become your best asset!



Here are some great places to start:



www.sensoryplanet.com– This is an amazing asset for all people, parents and caregivers of sensational children. A true social network of people dedicated to Sensory Processing Disorder. A must for any parent with an SPD kiddo. Don’t forget to make “friends” with the founder Carrie Fannin while you’re there!

www.spdfoundation.net – They have a great national program of Parent Connection hosts that provide in person support in major cities (and some minor ones too!) all over the US. Nothing beats in person support. Nothing.



5. Take care of yourself/Find Respite.

This is an over-used cliche: Take time for yourself. One would think that finding respite should be intuitive–right? We all get that we need some time alone, time away and time to be an adult with other adults. But, as the parent of a special needs kid, there seems to be an endless number of things we have to do for someone else, namely our kid(s), and we leave ourselves last.



Having time to recharge is something that many women think is a luxury–not a right. You cannot take care of someone else until you take care of yourself. As I tell my children, this is NOT a point of opinion but rather a point of fact. No need to argue facts, just accept them (they argue anyway).



Once you accept that you do need respite and you deserve respite you are nearly there! To start with, respite can be just allowing yourself a shower, preferably alone, every day. Or maybe it means you spend the extra hour after the kids are asleep doing your nails instead of doing the laundry.



Finding time for yourself really does make you a “whole” person. You deserve that, and so does your sensational kid.



6. Strengthen Your Marriage.



No matter how much you understand intellectually about the difficulties of raising a special needs kid, you can’t rationalize away the problems that come with it emotionally–for both of you.



Take the time for your marriage. This means talk to your husband, go to counseling BEFORE there are major issues, have dates, talk to each other about each other (and not just the kids for pete’s sake!) and spend time being a couple.



Please don’t tell me you don’t have time for those things or that you don’t need them. Strengthening your marriage is NEVER a bad thing–it isn’t like people say “Damn, my marriage so so strong I totally wasted my time and energy working on it!” Am I right or am I right?

When you have those things in place life will seem much easier. Not simple, not spur-of-the-moment-wine-tastings-with-friends-fun, but manageable. : )



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Adoption Kid Books

During my homestudy, we were told about an adoption book.  The name of the book is, "Tell me again about the day I was born" by Jamie Lee Curtis.   Yes that's the actress that wrote the book.  Very good story and colorful pics.  I would recommend this for your collection.  Here it is from Amazon:

http://www.amazon.com/Tell-Again-About-Night-Born/dp/0064435814/ref=sr_1_1?ie=UTF8&qid=1343994773&sr=8-1&keywords=tell+me+again+about+the+night+i+was+born

Another book we like is "A mother for Choco".  The link is below:

http://www.amazon.com/Mother-Choco-Paperstar-Keiko-Kasza/dp/0698113640/ref=sr_1_1?ie=UTF8&qid=1344341563&sr=8-1&keywords=a+mother+for+choco


Not only are these good books but it tells a story about adoption in a kid friendly way.  Best of luck and please share your favorite adoption book.

Adding a second child to the mix

My wife and I adopted our second child and he has been a joy to watch grow.  I have noticed that he loves his big brother.  One of the pluses to that is that he also wants to do what his brother is doing.  So he was trying to crawl before he had the strength to move.  Ethan would sit there and rock back and forth.  After he had the crawling part down he would start to pull up.   Very determined kid and we can think his big brother for that.

Now that I have told you that Ethan idolizes Aiden, let me tell you everything is not always fun around our house.  Aiden loves his little brother but he also has those moments of jealousy that you never know are coming.  He can love one second and then squeeze the next second.   How many times can my wife say, "Gentle Hands" to this kid?  She has patience, let me tell you.  Trying to encourage him to channel that power for good and not evil is challenging.  By the time, I get home from work, I have one tired Mama to help.  I wish I could tell you that I have all the answers for making two boys into friends but we are not there yet.

We do have a lot of fun though.  Trying to get two kids to the Doctors office or to church is huge.  One of our challenges this Summer is that Aiden is dark complected and Ethan is fare complected.  Letting Aiden have fun at the pool without giving Ethan 3rd degree burns is another Challenge. But we manage.

 Aiden wanted to have his bath with Ethan and that has been fun. My Mom says to enjoy this time and we do.  We try and expose the kids to a lot of fun events.  But it doesn't stop the many days of chaos.

Find a support group

Through the difficult times, it helps to have a shoulder or shoulders to cry on. Let me tell you that we have already been through two adoptions and we still need those shoulders to help us. We find that in our local church. You may call these groups Sunday School classes or small groups. Regardless, they perform the same function. It gives you a group of people to walk through it with you. When we adopted our first son, we met another couple who had already adopted their daughter. They were invaluable to us as support. Awesome couple. Now that we have adopted another one, we need our group to ask about things like, which Pediatrician do you use, how do deal with discipline, what do you think about homeschooling your kids, etc. We don’t have all of the answers. Sometimes, you walk through life and think that you have to know everything there is. This group is not for you to show off how much you know, how much you make, etc. They are shoulders to cry on. Ears to listen and even prayer partners.




I teach our small group and people immediately stepped in to teach, donated bottles, diapers, etc. They were great. And they still are. Let me tell you something else. You may be close to your family. They may or may not support your decision to adopt. Sometimes your family will counsel you the wrong way. Let me explain. You and your spouse may decide with God’s counsel that adoption is right for you. Then you go down some hard roads. Hit a few speed bumps and then your family may step in and counsel you to not go through with the adoption. It’s causing you too much pain. Go ahead and stop. Listen. Adoption can be hard. Adoption can cause you pain at times. When you have your hopes up for a situation and then you are matched, its great. But when you move farther down the adoption road then the birth mother backs out, it can rip your heart out. Trust me. We were 4 days from leaving and got the call that we didn’t want to hear. Kevin’s dad had second thoughts because he realized he just spent the last weekend with his son. Kevin was a toddler. He would have been great for my 4 year old. Instant play mate. That was tough. I won’t forget him. My wife won’t forget him. I tear up thinking about him and I have my second son. When you hit those times, lean on God and get a support group. It will help you.



If you have time, leave a comment. I would love to hear from you.

How to Welcome a Foster Child

from wikiHow - The How to Manual That You Can Edit

Welcoming a foster child into your home can be an exciting and rewarding experience. However, it can also be a challenging and potentially stressful situation for both you and the child. Fortunately, there are things you can do to make the transition safe and as stress-free as possible for you and your foster child.

Steps

1. Educate yourself as much as you can. The more you know about the child and his history, the easier it will be for you to understand his behavior.
   
   
2. Prepare your family for the child's arrival. Inform your extended family members that the child will be coming to stay with you and may be joining you at family gatherings. Speak with your immediate family about their expectations of the foster child and discuss any problems you can anticipate. For example, you may want to speak with your family about any special needs the child may have and how you will be dividing your time between the foster child and the rest of your family members. If you already have children, schedule time with each of them. This will decrease resentment between your children and the foster child, and will help ease the transition.
   
   
3. Be realistic. Your foster child will need to adjust to a new environment filled with new people, places, and policies. These adjustments require time and patience.
   
   
4. Be clear about your expectations. Once the child has had time to get settled, make sure she knows the rules of the house. The clearer you are about your expectations at the beginning, the less likely you are to have problems.
   
   
5. Listen to the child's questions and concerns. It is important for him to know that you care about what he has to say.
   
   
6. Develop a plan to deal with behavior problems. When the child misbehaves, be clear about why she is being punished. Explain why the behavior was wrong and that misbehaving has consequences. Be consistent when disciplining the child. End the conversation on a positive note.
   
   
7. Build self-esteem. Foster children, perhaps more than any other group of children, tend to suffer from low esteem. As such, it is important to encourage them and to help them participate in activities that will boost their self-esteem whenever possible.
   
   
8. Invite the child to family events. Even if she chooses not to go, it is important that that she feels included.
   
   
9. Prepare your house. This is particularly important if the foster child is very young. It is essential that you create an environment that is both physically and emotionally safe.
   
   
10. Help the child create a personal space. Even if you don't have an entire room available, set aside an area of the house (bed, wall, closet, etc). Once the child has seen the space, help her decorate it in a way that is meaningful to him. This will help the child feel at home, and it will give both of you the opportunity to get to know one another better.
    
    

Sources and Citations

• http://www.thechildrenstrust.org/10-tips-for-talking-with-kids-about-tough-issues/788
  
  
• http://www.ocfs.state.ny.us/main/fostercare/living.asp
  
  
• http://foster-care.adoptionblogs.com/weblogs/helping-your-foster-child-feel-at-home
  
  

Article provided by wikiHow, a wiki how-to manual. Please edit this article and find author credits at the original wikiHow article on How to Welcome a Foster Child. All content on wikiHow can be shared under a Creative Commons license.

Setting your kids up to succeed

As parents we want our kids to succeed in life.  We all have our own methods of doing this.   Some will say that we should send our kids to private school while others try to teach their kids their ABC's by 18 months. Here is what we did.

The first move that we made was to let my wife stay home to raise our kids.  We noticed with my first son that he was going to daycare.  We all know that daycare was a germ factory so he would stay sick.  My wife was spending all of her vacation time at home with the kid who was too sick to take to school.    The other factor was that he hit a bad teacher.  His 18 month teach was fine but at 2, he wasn't doing well in that room.   My wife was constantly filled with mommy guilt that our child was being raised by the day care instead of her.  So we made the conscience decision for my wife to stay home.

The second move was for my wife to homeschool.   I know there various "Schools of thought" pardon the pun, for homeschooling vs public school.  As a matter of fact, we live in a great school district.  However, for our case, my 4 year old was diagnosed with Sensory Processing.   This means that he doesn't function well in groups.  In order for him to get an education at a pace and in an environment that he can succeed, we decided to home school him. 

The third move was for us to have him see an OT for his sensory in order to address his needs.  He was a little behind in his motor skills and especially in dealing with groups.   The OT would address both of these.  Some people have argued that he could get the help that he needs for OT from the school system.  We did talk about that as a couple.  What is best of Aiden.  For us, we found out his OT was sought after from all over the state of GA.   We also didn't want him "Labled" by the school system.

Maybe your child is gifted at sports, so you are opening doors in that area for your kids.  Perhaps, your child is gifted as a dancer or in music and you are encouraging that area of their life.  These are things that we do to set our kids up for success.  The secret is not to obcess over their acheivements.  We don't want to be a "helicopter parent" where we smother our kids.  We also don't want to become those parents that get into fights at ball fields because someone yelled something that we didn't agree with. Try and set the best example for your little ones. 

Pray for them.  Especially you future adopted parents who are waiting.  Smother your kids in prayer and not activities.  They need more of you.  Prayer works.  God is listening so let him know your requests.  I ask him to protect my family every day.  And so should you.

God Bless
Joe

A Miracle Inside the Aurora Shooting: One Victim’s Story

My Comments::
Here's an amazing story.  Its not about adoption but it made me think of the amazing story of both of my boys. Let me tell you that I am a Christian and you don't have to be one to adopt but it sure helps you ride out the ups and downs that they tend to be sometimes.   God has been so good to me and my family. 
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Author’s Update (7/24/12, 13:26): Petra was moved from ICU yesterday. She continues to improve. Please keep praying. Far less importantly, the Comment section has been closed. Why? Since this web site went up Sunday afternoon, the amount of traffic has gone viral, averaging about 71,000 hits per hour. This means that the comments traffic has been overwhelming, and beyond our ability to keep up with. By far, most comments have been wonderful and supportive. God bless you all. All kinds of ideas and thoughts have been posted: thankful, angry, sad, questioning, amazed, rude, kind, and insightful. The world is filled with people who see this tragic event from different perspectives. I am thankful for all of you who commented, whether you agreed with my world view and faith perspective or not. We have been forced to think and reflect–a very good thing. I hope the dialogue continues in other venues.




At Columbine, I have seen this before. But not up close. As a church pastor in Denver, I have worked as a chaplain alongside several police and fire departments. I was privileged to counsel parents just hours after the Littleton Columbine shootings. However, in this new tragedy at the Aurora Theater Dark Night shooting, one of the victims was a 22 year old woman from my church, Petra Anderson (pronounced Pay-tra). Petra went to the movies with two young friends who are biking across America. You and I have been inundated with news about what happened next. A joyful movie turned into bloody, unbelievable chaos. Petra was hit four times with a shot-gun blast, three shots into her arm and one bullet which entered her brain. This a bit of Petra’s miracle story.



With awesome people from our caring and pastoral team, I spent all day Friday in the ICU with Petra and her family. Her injuries were severe, and her condition was critical. A bullet had entered Petra’s face through her nose, and then traveled up through her brain until stopping at the back of her skull. The doctors prior to surgery were concerned, because so much of the brain had been traversed by the bullet. Many areas of brain function were involved. They were hoping to keep her alive long enough to get her into surgery. The prognosis was uncertain—if she lived, Petra might struggle with speech, movement, and thinking due to considerable brain damage. With Kim, Petra’s mother (who is in the final stages of terminal cancer), we simply cried, hugged, and prayed.



It is pressed into my memory now. Motion and emotion…



Other families come and go into the ICU waiting room. Some sit with us, and we talk. Others are visited by doctors with “Family Advocates” in tow. The families listen, sob, and then are moved like stunned cattle to a more private space to grieve. We pray. Petra is finally taken into surgery, using two different surgical teams. One team of neurosurgeons will open up the back of her skull to remove the bullet and clean up brain damage as best they can. Another ENT-specialty surgical team will then work through Petra’s nose by scope to follow the bullet’s path up into her brain. Their hope is to remove bone fragments, clean up damaged brain tissue, and reseal her brain to reduce infection.



If you have lived any of your days in a hospital waiting room, you know how long the enduring process is. It has a woeful pattern to it. Sit. Walk. Grab a drink. Sit. Walk. Answer a phone call. Sit. Walk. Hug someone. Sit. Talk to the FBI. Sit. Pick at the food. Sit. Walk. Go down the hall, but not too far because you’re afraid to miss something. Back. Hug. Pray. Sit. Sit. A picture of a five year old waiting for next Christmas from January 1st comes to my mind. FOREVER. Only this feels worse: a heavy forever, with no promise of presents, Santa, or good news at the end.





—Petra Anderson and her world class violin.

After the waiting drags for over five hours, tired doctors and nurses spill back into the room, one or two at a time. I look for “Family Advocates” but can find none. I exhale. The doctors update us: “It went well, and she’s recovering now. We found very little damage to the brain, and got the bullet out cleanly. It went better than we hoped for.” Each brings a warrior’s smile, and a bit of information—information that we turn into hope as we regurgitate it over the next hours. Still, the medical team remains professional and reserved, “Something might still go wrong. We just need to wait and see if she makes it for the next 48 hours.”



Tears and thank you’s abound. We are so thankful for these men and women. We hug. Everyone hugs. Then, round two. Sit. Wait. Pray. Fully dressed people cuddle into small snails and try to sleep on the floor. Some are shuttled to a room donated by the Holiday Inn across the street. Thank you, Lord, for every little thing. We sit. We pray. “We’ll understand better tomorrow.”



Petra is moved back to ICU. She looks, surprisingly, wonderful. With a small hole in her nose, and her arm wrapped, she almost looks uninjured. She is medicated and sleeping when I come to visit her on Saturday. I sit, talk, and pray quietly with Kim amid the darkened room, lit by glowing medical screens and power switches. Nurses, like quiet soldiers posted on guard, come in, march attentively through the machines, and go out. These men and women really care. Finally, one of the surgeons comes in to check on Petra. He has had some sleep, and looks more like a movie star this time. As Petra sleeps, he retells the story of the surgery, and we ask questions. The doctor reads the perfect script, as if he is on Hallmark Hall of Fame. He fills us in on the miracle. Honestly, he doesn’t call it that, he just uses words like “happily” and “wonderfully” and “in a very fortunate way” and “luckily” and “we were really surprised by that.” Kim and I know a miracle when we see it.



It seems as if the bullet traveled through Petra’s brain without hitting any significant brain areas. The doctor explains that Petra’s brain has had from birth a small “defect” in it. It is a tiny channel of fluid running through her skull, like a tiny vein through marble, or a small hole in an oak board, winding from front to rear. Only a CAT scan would catch it, and Petra would have never noticed it.



But in Petra’s case, the shotgun buck shot, maybe even the size used for deer hunting, enters her brain from the exact point of this defect. Like a marble through a small tube, the defect channels the bullet from Petra’s nose through her brain. It turns slightly several times, and comes to rest at the rear of her brain. And in the process, the bullet misses all the vital areas of the brain. In many ways, it almost misses the brain itself. Like a giant BB though a straw created in Petra’s brain before she was born, it follows the route of the defect. It is channeled in the least harmful way. A millimeter in any direction and the channel is missed. The brain is destroyed. Evil wins a round.



As he shares, the doctor seems taken aback. It is an odd thing to have a surgeon show a bit of wonder. Professionally, these guys own the universe, it seems, and take everything in stride. He is obviously gifted as a surgeon, and is kind in his manner. “It couldn’t have gone better. If it were my daughter,” he says quietly, glancing around to see if any of his colleagues might be watching him, “I’d be ecstatic. I’d be dancing a jig.” He smiles. I can’t keep my smile back, or the tears of joy. In Christianity we call it prevenient grace: God working ahead of time for a particular event in the future. It’s just like the God I follow to plan the route of a bullet through a brain long before Batman ever rises. Twenty-two years before.



While we’re talking, Petra awakes. She opens her eyes, and sits up, “Mom.” Movie-star doctor spins to grab her, to protect her from falling. The nurse assures him she’s been doing this for a while. He talks to her, and she talks back. He asks questions, and Petra has the right answers. “Where do you hurt, Petra?” “All over.” Amazed, but professional, he smiles and leaves the set shaking his head. I am so thankful for this man.



Petra is groggy and beat up, but she is herself. Honestly, I look worse before my morning coffee. “I’m thirsty,” she proclaims.



“You want an ice cube, honey?” Kim replies.



“Please.” Wow. She lays down, back to sleep, a living miracle who doesn’t even know it yet. Good flowering out of the refuse pile of a truly dark night. “Thank you, Jesus,” I whisper.







Petra, you are amazing. Kim, you, too, are amazing. I am so proud of you both. But God, you are in a league of your own. (Duh.)



There is much ahead. More surgerys. Facial reconstruction, perhaps. And for Kim, chemo therapy to stretch every moment out of life. But life remains.The ending is yet to be written for this family. One final note: I am told Petra will take her first steps today. Time for the miracle to go for a walk.



Kim and Petra need our help. For more on the Andersons, or to help with their medical costs, please visit here. This is a great site.





More information about supporting Petra Anderson and other shooting victims is also available at Hope Rises: