Friday, December 18, 2009
Monday, November 2, 2009
Halloween
This Halloween was a pretty big step up for Zion. The past few years he hasn't really understood the dressing up and going out asking for candy. Most of the houses that we went to last year I had to tell the people inside that he had autism and that is why he just walked right into their house and sat down or why he didn't come within ten feet of the inflatable casket with smoke pouring out. This year he was the one leading the gang. First of all he started getting ready for Halloween October 1st. He has looked forward with much anticipation to the school party, trick or treating and "the pumpkin patch."
Halloween night we dressed him up in the little Air Force pilot's outfit (embroidered with his name) from his aunt Jessica and bought a Speed Racer helmet at Walmart. He hated that the helmet kept yelling speed racer noises in his ear, but we told him he would get more candy if he kept it on. He got in to the swing of things and didn't seem scared of the inflated skeletons or huge clown giving out candy. The only thing that seemed to faze him at all was when he came around a car in the drive way and saw the homeowner dressed up as a zombie, sitting in a chair ready to scare whomever came to his door. I don't think he got candy from that house, he ran too fast. But on the other hand, every child ran. It wasn't just the child with autism.
I am just so proud of him. He conquered a lot of fears this past weekend. He realized that the sounds, smells, and smoke and illusions are all just part of the holiday. There are actually people behind those masks and they are just wanting candy too! We are all out there for one thing. And I think we have found the reward for Zion for all those fears conquered. Candy!
Wednesday, October 14, 2009
Getting Siblings Involved and 15 tips for your Family with an Autism Diagnosis
Jason and I have spent much of our time talking, advocating and raising money for autism research . We have had therapists come and go through our house, playing and teaching Zion, and understandably our daughter Hannah sometimes feels neglected.
Through the years she has struggled with having a brother with autism. She is jealous of the attention he gets from everyone and some times she feels frustration with not having a neurotypical brother to play with. She has said many times she wished Zion did not have autism. Other times she has said she wished she had autism, so that we could have a walk just for her.
Letting her express her feelings, educating her about autism, and giving her much needed alone time with mommy and daddy has helped. But there are some of her feelings that I won't be able to understand, because I am a mother not a sibling of someone on the spectrum. We have done a couple things over the years that seem to have helped develop her confidence and a purpose as a sibling of a brother with autism.
First of all, Educate them. Hannah is a known autism advocate and I always call her Zion's greatest therapist. She has been here 24/7 teaching Zion everything a neurotypical child should know. She quizzes him on feelings, and does floor time therapy as well and I do. She knows what autism is and how many children are affected by it. She knows the different sensitivities that a child might have and what helps sooth Zion. Unfortunately, she also knows what triggers him, which just shows how they have developed a normal sibling relationship. I can never express my thankfulness at having a neurotypical child first, before Zion. She has been a great model for him.
Second, Get them involved. Making Hannah an integral part of our Walk Now for Autism team has given her confidence. She knows the other siblings of children on the spectrum in our community. She speaks to her girl scout troop and class about autism. She also befriends other kids at her school who are on the spectrum. She has been a patient teacher and friend to boys in her class who are struggling, just as she has been for Zion.
Finally, Do things for them that have nothing to do with autism. Girl Scouts, piano lessons, mommy and daughter trips (just went to California with her) and dance parties in the living room are some of the things she just loves to do. She comes first during these times. She gets our attention just as much as Zion does.
Sometimes we have let autism become our life to the neglect of everything else. I know every mother understands what I am talking about. But we must make sure our other kids know they are just as special and they have a wonderful and awesome place in our family.
Fifteen Tips for Your Family
As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:
5 Tips for Parents
Learn to be the best advocate you can be for your child. Be informed. Take advantage
of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.
Don't push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It's OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry.
Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances.
Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they should be.
Get involved with the Autism community. Don't underestimate the power of “community”. You may be the captain of your team, but you can't do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.
5 Tips for Brothers & Sisters
Remember that you are not alone! Every family is confronted with life's challenges… and yes, autism is challenging… but, if you look closely, nearly everyone has something difficult to face in their families.
Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic…they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It's okay to feel your feelings. And, often it's easier when you have a professional counselor to help you understand them – someone special who is here just for you! Love your brother or sister the way they are.
While it is OK to be sad that you have a brother or sister affected by autism it doesn't help to be upset and angry for extended periods of time. Your anger doesn't change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.
Spend time with your Mom and Dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It's OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn't have autism, you would still need alone time with Mom and Dad.
Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
5 Tips for Grandparents and Extended Family
Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.
Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family's child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family's hearts to know that you are pitching in to create support and closeness.
Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.
Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system…but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.
Put judgment aside. Consider your family's feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best.
Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.
Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Yes, they may be different but both children look forward to spending time with you. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier…it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making.
First of all, Educate them. Hannah is a known autism advocate and I always call her Zion's greatest therapist. She has been here 24/7 teaching Zion everything a neurotypical child should know. She quizzes him on feelings, and does floor time therapy as well and I do. She knows what autism is and how many children are affected by it. She knows the different sensitivities that a child might have and what helps sooth Zion. Unfortunately, she also knows what triggers him, which just shows how they have developed a normal sibling relationship. I can never express my thankfulness at having a neurotypical child first, before Zion. She has been a great model for him.
Second, Get them involved. Making Hannah an integral part of our Walk Now for Autism team has given her confidence. She knows the other siblings of children on the spectrum in our community. She speaks to her girl scout troop and class about autism. She also befriends other kids at her school who are on the spectrum. She has been a patient teacher and friend to boys in her class who are struggling, just as she has been for Zion.
Finally, Do things for them that have nothing to do with autism. Girl Scouts, piano lessons, mommy and daughter trips (just went to California with her) and dance parties in the living room are some of the things she just loves to do. She comes first during these times. She gets our attention just as much as Zion does.
Sometimes we have let autism become our life to the neglect of everything else. I know every mother understands what I am talking about. But we must make sure our other kids know they are just as special and they have a wonderful and awesome place in our family.
I thought this article from Autism Speaks was really good for the family who has received a diagnosis of autism for their daughter or son.
Fifteen Tips for Your Family
As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:
5 Tips for Parents
Learn to be the best advocate you can be for your child. Be informed. Take advantage
of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.
Don't push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It's OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry.
Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances.
Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they should be.
Get involved with the Autism community. Don't underestimate the power of “community”. You may be the captain of your team, but you can't do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.
5 Tips for Brothers & Sisters
Remember that you are not alone! Every family is confronted with life's challenges… and yes, autism is challenging… but, if you look closely, nearly everyone has something difficult to face in their families.
Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic…they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It's okay to feel your feelings. And, often it's easier when you have a professional counselor to help you understand them – someone special who is here just for you! Love your brother or sister the way they are.
While it is OK to be sad that you have a brother or sister affected by autism it doesn't help to be upset and angry for extended periods of time. Your anger doesn't change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.
Spend time with your Mom and Dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It's OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn't have autism, you would still need alone time with Mom and Dad.
Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
5 Tips for Grandparents and Extended Family
Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.
Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family's child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family's hearts to know that you are pitching in to create support and closeness.
Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.
Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system…but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.
Put judgment aside. Consider your family's feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best.
Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.
Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Yes, they may be different but both children look forward to spending time with you. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier…it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making.
Thursday, October 8, 2009
Walk Now for Autism 2009
We had a great turn out for the Walk Now for Autism Speaks Day at Jordan Valley Park September 12Th, 2009. Over 600 people came out on the most beautiful walk day we have had in three years (no rain). They took advantage of food, fun, and a resource fair that included vendors like Camp Barnabas, DCO, and the Autism Speaks Store plus many many more. I want to thank all the donors and sponsors and the hard work of the walk committee. You guys are so great!
I also want to express my thankfulness for the friends and family that come out each year to support Zion, our family and all others that are on the autism spectrum. I especially want to thank Lynn Ramsey for making the beautiful quilt that we auctioned off the day of the walk. Also, all of Zion's teachers that come out year after year even though Zion is no longer in their class. We truly are blessed by your kindness and your dedication to this cause and to Zion.
I also want to express my thankfulness for the friends and family that come out each year to support Zion, our family and all others that are on the autism spectrum. I especially want to thank Lynn Ramsey for making the beautiful quilt that we auctioned off the day of the walk. Also, all of Zion's teachers that come out year after year even though Zion is no longer in their class. We truly are blessed by your kindness and your dedication to this cause and to Zion.
Friday, August 28, 2009
Walk Now for Autism 2009
We are gearing up for the Walk Now for Autism at Jordan Valley Park THIS Saturday, September 12th. We are so excited to be walking for our fourth year. We are doing a number of fund raisers this year. We are still selling tickets for our awesome quilt that Mrs. Lynn Ramsey made especially for this event. Tickets can be bought by family members and team members of Zion's Tribe for 1/$1 or 6/$5. We also are selling puzzle pieces at a number of businesses around Ozark. And of course we are taking donations outright through our autism donation page.
Donation Page:
Information on the Walk:
Walk Now for Autism is a family-friendly event so bring the whole family along! There are activities for the children like a bounce house and temporary tatoos, as well as an autism resource fair for families. We'll have light refreshments and entertainment including musical performances and possibly some famous faces!
Walk Now for Autism 2009
Jordan Valley Park
635 E Trafficway St
Springfield, MO 65806
Registration opens: 9:00 a.m.
Resource Fair opens: 9:00 a.m.
Walk Start: 10:00 a.m.
Donation Page:
Information on the Walk:
Walk Now for Autism is a family-friendly event so bring the whole family along! There are activities for the children like a bounce house and temporary tatoos, as well as an autism resource fair for families. We'll have light refreshments and entertainment including musical performances and possibly some famous faces!
Walk Now for Autism 2009
Jordan Valley Park
635 E Trafficway St
Springfield, MO 65806
Registration opens: 9:00 a.m.
Resource Fair opens: 9:00 a.m.
Walk Start: 10:00 a.m.
Thursday, July 30, 2009
Shirts
Zion's Tribe Walk Now for Autism Speaks 2009 shirts are being designed right now. If you want an awesome shirt for a great cause...order yours now. This is not the final design. But the only thing that might change is the font. Just leave a comment with your email address and I will get back to you. All money goes to the cost of the shirt. They will be around twenty dollars.
Saturday, July 11, 2009
Walk Now for Autism 2009
Join our autism walk team today and start raising money for autism research and for community outreach projects. We are in the middle of our fundraising year with the walk coming up fast.
The walk is September 12th, 2009 at Jordan Valley Park. We also will be holding the quilt raffle right after the walk. If you raise $150 by walk day you receive a free walk day t-shirt. Jason and I will also be selling Zion's Tribe t-shirts soon. So check back with us.
Here is the link to join our team.http://www.walknowforautism.org/springfield/zionstribe
Thursday, April 30, 2009
Quilt Raffle to benefit Autism Speaks
Team Zion's Tribe is raffling off a beautiful homemade quilt made by Lynn Ramsey.
The tickets are 1 for $1 or 6 for $5.
The raffle will occur right after the Walk Now for Autism September 12th, 2009 at Jordan Valley Park, Springfield, Mo.
The tickets are 1 for $1 or 6 for $5.
The raffle will occur right after the Walk Now for Autism September 12th, 2009 at Jordan Valley Park, Springfield, Mo.
Tuesday, April 7, 2009
Wine, Cheese and Silpada Jewelry: Proceeds Benefit Autism Speaks
Update: We raised almost $500 dollars with our Silpada Jewelry Sales. We had a fantastic time eating and tasting wine while we perused beautiful Silpada Jewelry. Thank you so much Kara Amstutz, who donated her commission to our walk now for Autism team.
Wine, Cheese and Silpada Jewelry
April 18th 4-7pm (Come and Go)
Vino 100
2145 West Republic Road
Springfield, MO 65807
Come in a take a look at Silpada's beautiful Jewelry collection.
We will have wine and cheese while you browse.
My wonderful friend Kara Amstutz is donating her profits to our
Walk Now for Autism Team. All the proceeds will go to Autism Speaks.
www.mysilpada.com/kara.amstutz
www.vino100springfield.com
Wine, Cheese and Silpada Jewelry
April 18th 4-7pm (Come and Go)
Vino 100
2145 West Republic Road
Springfield, MO 65807
Come in a take a look at Silpada's beautiful Jewelry collection.
We will have wine and cheese while you browse.
My wonderful friend Kara Amstutz is donating her profits to our
Walk Now for Autism Team. All the proceeds will go to Autism Speaks.
www.mysilpada.com/kara.amstutz
www.vino100springfield.com
Saturday, February 21, 2009
What is God?
I don't know where Zion learned the phrase "Oh my God!", but it has become an obsession of sorts. He says it all the time. I have told him to say "oh my goodness" or "oh my gosh", but it is hard for him to change once he gets into a habit.
The other day he had to have a tooth extracted. We took him to a pediatric dentist because we thought they would put him to sleep while doing the surgery. We found out later they didn't. He did well because he didn't know what was coming. We then had to take him back two weeks later to get the spacer put in so the permanent tooth could grow into that space. Well, this time he knew what was coming. He had been here before and was very anxious over what was going to happen. Jason was not allowed back and actually had to sign a release for them to strap him to the table. When he was done he was traumatized. Jason told me later that all Zion could say was "Oh my God! Oh my God!" over and over. Now when an exciting or anxious event happens Zion starts reciting his "Oh my God!".
Anyway, I think I am making an impression on him. I have told him so many times to not use "God", but use "goodness or gosh" that I think he started thinking about why he shouldn't say that. About fifteen minutes ago he came up out of the blue and asked me: "Mom, Who is God?"
I told him he is "the guy who made you and lives in heaven". I had to make God something that he could touch because he is so factual and concrete he would not have understood the idea of an invisible creator who also lives in your heart. I think this is difficult for Hannah to understand, let alone Zion, who has to see everything to believe.
Anyway, I know that Zion is probably more in tune with the world and the spirit than I am. He is so sensitive to the things that God has made. He sees a leaf blowing down the road or smells flowers when they first bloom...He feels things that I can't. He is in tune with God's creation. Do I really need to explain to him something that he will never be able to grasp?
Wednesday, February 18, 2009
The Autism Blog
I am posting this because I am excited about the future of this kids writing. He has started a blog on how a sibling of a child with autism thinks and lives. This is really touching and I just felt so connected with him.
I think we have been different than most families regarding autism. Hannah and Zion have a unique relationship. In the beginning Zion would not play with Hannah. She had to teach him. I could hear her through the door saying, "Zion do you want to play with barbies? Zion say yes." And because he took commands at the time he would sit there and hold the barbie while Hannah made up all the dialogue. It was actually pretty funny. But I am so thankful for her and how she taught him how to play with her. Now she is his best friend.
It is so hard for siblings of children with Autism. I really believe they miss out on a lot of stuff, because parents are focusing so much on the child with Autism. Hannah sees therapists come in and "play" with Zion. She wants to play with them. She doesn't understand the ideas behind the play. Anyway, this blog is written well and a wonderful, realistic view of how a sibling feels.
To read the blog click here:
http://www.autismfile.com/papers/charlies_world.asp
I think we have been different than most families regarding autism. Hannah and Zion have a unique relationship. In the beginning Zion would not play with Hannah. She had to teach him. I could hear her through the door saying, "Zion do you want to play with barbies? Zion say yes." And because he took commands at the time he would sit there and hold the barbie while Hannah made up all the dialogue. It was actually pretty funny. But I am so thankful for her and how she taught him how to play with her. Now she is his best friend.
It is so hard for siblings of children with Autism. I really believe they miss out on a lot of stuff, because parents are focusing so much on the child with Autism. Hannah sees therapists come in and "play" with Zion. She wants to play with them. She doesn't understand the ideas behind the play. Anyway, this blog is written well and a wonderful, realistic view of how a sibling feels.
To read the blog click here:
http://www.autismfile.com/papers/charlies_world.asp
Friday, December 5, 2008
Update on Zion
DECEMBER 2008
My son is so amazing. The words that are coming out of his mouth!!! Full sentences and used in the proper context. He also comprehends so much more than even six months ago. I can ask him to do two or three commands in one sentence and HE GETS IT RIGHT. Even a couple months ago he was only able to take one command at a time, example "take shoes to your closet". Now I can say, "Take your shoes to the closet, clothes to the hamper and get pj's." The progress he has made amazes me.
He is the happiest child. He loves his life. He loves people and wants them to be happy too. He never knows when someone is making fun of him. He tries everything we ask him to do. He absolutely loves affection and eats it up. I love his hugs and kisses everyday. He is so tender and loving. He makes me so happy each day.
I still wonder about his future though. I pray each day that his progress will continue and not fade out. Although life in our household is so much easier Zion still has some idiosyncrasies. He still has trouble with the phone ringing. He smells everything before he will touch or taste it. He still has little episodes of complete hyperactivity and absolute craziness when he is too excited or has sensory overload. He has a lot of trouble with yelling out in class, and home (He is so loud!!!). He doesn't really understand personal space and common decency (He gets about two inches from your face to talk to you and sorta likes to be nude).
When we (therapists and us) all thought that Zion should go to Kindergarten we knew he was going to have a rough time of it and would almost surely have to repeat Kindergarten. Not only for social reasons but also for academic. But he has continually amazed his teachers and us. He has excelled in academia and has made much progress socially. He still has a long way to go, but he is doing so great. He really has been the poster child for early intervention and how early therapy can make a difference in a child with Autism.
I am really looking forward to seeing how Zion reacts to Christmas this year. This is the first year that he has noticed ads on television and magazines for toys. He has actually told us a number of times, “I want that”. Last year it took him all day to open his presents, because he was not interested in them at all. He really didn't care about anything other than movies. This year he is excited and wants to hear Christmas stories and open the advent calendar.
Everyday I thank God for the progress he has made in Zion. I then also think about all those moms who have not had any progress occur in the last year. The ones that have children still trapped in their own worlds. I pray that a breakthrough occurs. I pray that they can somehow communicate with their child, so that they both have a connection with each other and feel the love of a parent and child. Lord please grant us a gift this year of a medical breakthrough in autism research. Let us be able to reclaim our children.
My son is so amazing. The words that are coming out of his mouth!!! Full sentences and used in the proper context. He also comprehends so much more than even six months ago. I can ask him to do two or three commands in one sentence and HE GETS IT RIGHT. Even a couple months ago he was only able to take one command at a time, example "take shoes to your closet". Now I can say, "Take your shoes to the closet, clothes to the hamper and get pj's." The progress he has made amazes me.
He is the happiest child. He loves his life. He loves people and wants them to be happy too. He never knows when someone is making fun of him. He tries everything we ask him to do. He absolutely loves affection and eats it up. I love his hugs and kisses everyday. He is so tender and loving. He makes me so happy each day.
I still wonder about his future though. I pray each day that his progress will continue and not fade out. Although life in our household is so much easier Zion still has some idiosyncrasies. He still has trouble with the phone ringing. He smells everything before he will touch or taste it. He still has little episodes of complete hyperactivity and absolute craziness when he is too excited or has sensory overload. He has a lot of trouble with yelling out in class, and home (He is so loud!!!). He doesn't really understand personal space and common decency (He gets about two inches from your face to talk to you and sorta likes to be nude).
When we (therapists and us) all thought that Zion should go to Kindergarten we knew he was going to have a rough time of it and would almost surely have to repeat Kindergarten. Not only for social reasons but also for academic. But he has continually amazed his teachers and us. He has excelled in academia and has made much progress socially. He still has a long way to go, but he is doing so great. He really has been the poster child for early intervention and how early therapy can make a difference in a child with Autism.
I am really looking forward to seeing how Zion reacts to Christmas this year. This is the first year that he has noticed ads on television and magazines for toys. He has actually told us a number of times, “I want that”. Last year it took him all day to open his presents, because he was not interested in them at all. He really didn't care about anything other than movies. This year he is excited and wants to hear Christmas stories and open the advent calendar.
Everyday I thank God for the progress he has made in Zion. I then also think about all those moms who have not had any progress occur in the last year. The ones that have children still trapped in their own worlds. I pray that a breakthrough occurs. I pray that they can somehow communicate with their child, so that they both have a connection with each other and feel the love of a parent and child. Lord please grant us a gift this year of a medical breakthrough in autism research. Let us be able to reclaim our children.
Rehash of Zions progress
Time line of events. You can find all these in our old blogs. Read the update above.
March 2008
My little boy has grown so much over the last year, that I haven't even blogged his growth because it has gone so fast. I am so thankful for all the work that so many people have put into him.
I just got the paperwork to send Zion to Kindergarten. He has his preview day March 12th. He will probably have one year with a para and then try to do it on his own.
It is a scary thing for a mom to send their child with Autism to a regular classroom setting. I am so scared. I sorta dread it as the time gets sooner. But this is just one step in his healing.
He now is talking and has a pretty big vocabulary. Most of the time we still have a hard time understanding him, but it gets clearer and clearer each day. Before his words would express his immediate need. Such as "Juice!!" or "Potty !!", Now he comes in singing the Alladin theme song. Or tells us that he wants pizza, in a full sentence. I love to hear his thoughts. I love to hear him sing. I love to hear him at all. It is joy to my ears.
I sometimes am scared that his progress will stop tomorrow. He turns five this year, the magic age of five. Where all research says that the brain slows its growth and learning slows down. I fear that he will stay at this stage forever. Then I have to remember how wonderful he is, and affirm to myself that if God chose to do that, I could handle it. Look how much we have handled so far. God is so good. He gave me this child, this wonderful child, because he knew that this child would need double the love and patience.
Please protect my little bird from the vultures in a regular school. Protect his heart from those who do not understand the mysterious world of Autism. May he be a light of understanding to people that are scared of things they don't understand. And may people see God in my son. Because I do everyday.
September 1 2006
Since we first wrote Zion's Story things have drastically changed in many areas of his life. First of all he has excelled in Floortime Therapy. In late August he started at special education preschool. Before school began, his Floortime therapist asked me to bring Zion in to use as an example of how to implement Floortime techniques. One of the teachers asked us if we had some sort of video of what Zion was like before Floortime was implemented. I wish I had been that smart!!! The changes are so dramatic, I don't think I would have believed it to be the same child, if I didn't know better!
Zion was diagnosed last March. Seven months ago Zion would not keep his eyes open outside of our home. He was completely non-verbal. No words at all! He would babble a little: mamama, bababa, but that was all. Today Zion can say and understand probably forty words. His comprehension has gone way up also. He can take four or five commands: for example, "go get a diaper" and "go get your blanket". He is starting to try and sing the actual words to songs instead of just humming. He walks on his own and doesn't have to be carried everywhere (my back has gotten a break). We can now go to the mall and he looks around and enjoys the sight of other children and even greets people by saying "hello" and "bye-bye". The changes that have taken place are astounding. I truly believe that God sent Floortime Therapy to us.
If you saw Zion from a distance you would not believe that there was anything wrong or different about him. He now interacts with his teachers and is starting to even notice his other classmates. He absolutely loves to go to school each day. And when I pick him up he sees me from down the hall and starts screaming for me. It is the highlight of my day. On Thursday he even said, "hi mama". His first sentence. I am even crying as I write it.
He still has so far to go. Potty Training. Dressing himself. Brushing Teeth. ABC's. 123's. Kindergarten. I hold on to the hope and know that Zion will go to Kindergarten just like any other five year old. I look forward to each day because he continually amazes me.
June 2006
In many ways, Zion is a normal boy. He loves to run, climb, and play. He enjoys stacking blocks and doing puzzles just like many of his toddler peers. Unlike his peers, however, Zion does not seem to be interested in laughing and playing with other kids. Instead, he “zones out” while looking at an aquarium or playing with a string of beads. In unfamiliar situations or new places, he becomes quite uncomfortable. Sometimes he hides his eyes or lies on the floor, sometimes he breaks out into a full tantrum. Also unlike most of his peers, Zion has difficulty communicating. At age three, he only speaks a handful of words and often confuses their context. Sometimes it seems like he is in his own world in some far off place. Other times, it seems like his brain is not “wired” correctly to handle everyday word associations and social cues. Many of Zion’s challenges started as subtle idiosyncrasies during his second year of life, but became noticeable enough that he was diagnosed with Autism at 32 months. We are now on a quest to learn everything we can about Autism and its treatment. In just a few short months, Zion has made great strides with the help of various therapists – one of the most valuable being is his own mom who has regularly scheduled “therapy” sessions several times each day. Zion is speaking new words every day. He starts public preschool this fall and our hope is that he will someday participate in a normal classroom environment. For now, though, we are taking one day at a time as we celebrate small victories like hearing Zion say “mama” in the right context or a trip outside the house without meltdown.
March 2008
My little boy has grown so much over the last year, that I haven't even blogged his growth because it has gone so fast. I am so thankful for all the work that so many people have put into him.
I just got the paperwork to send Zion to Kindergarten. He has his preview day March 12th. He will probably have one year with a para and then try to do it on his own.
It is a scary thing for a mom to send their child with Autism to a regular classroom setting. I am so scared. I sorta dread it as the time gets sooner. But this is just one step in his healing.
He now is talking and has a pretty big vocabulary. Most of the time we still have a hard time understanding him, but it gets clearer and clearer each day. Before his words would express his immediate need. Such as "Juice!!" or "Potty !!", Now he comes in singing the Alladin theme song. Or tells us that he wants pizza, in a full sentence. I love to hear his thoughts. I love to hear him sing. I love to hear him at all. It is joy to my ears.
I sometimes am scared that his progress will stop tomorrow. He turns five this year, the magic age of five. Where all research says that the brain slows its growth and learning slows down. I fear that he will stay at this stage forever. Then I have to remember how wonderful he is, and affirm to myself that if God chose to do that, I could handle it. Look how much we have handled so far. God is so good. He gave me this child, this wonderful child, because he knew that this child would need double the love and patience.
Please protect my little bird from the vultures in a regular school. Protect his heart from those who do not understand the mysterious world of Autism. May he be a light of understanding to people that are scared of things they don't understand. And may people see God in my son. Because I do everyday.
September 1 2006
Since we first wrote Zion's Story things have drastically changed in many areas of his life. First of all he has excelled in Floortime Therapy. In late August he started at special education preschool. Before school began, his Floortime therapist asked me to bring Zion in to use as an example of how to implement Floortime techniques. One of the teachers asked us if we had some sort of video of what Zion was like before Floortime was implemented. I wish I had been that smart!!! The changes are so dramatic, I don't think I would have believed it to be the same child, if I didn't know better!
Zion was diagnosed last March. Seven months ago Zion would not keep his eyes open outside of our home. He was completely non-verbal. No words at all! He would babble a little: mamama, bababa, but that was all. Today Zion can say and understand probably forty words. His comprehension has gone way up also. He can take four or five commands: for example, "go get a diaper" and "go get your blanket". He is starting to try and sing the actual words to songs instead of just humming. He walks on his own and doesn't have to be carried everywhere (my back has gotten a break). We can now go to the mall and he looks around and enjoys the sight of other children and even greets people by saying "hello" and "bye-bye". The changes that have taken place are astounding. I truly believe that God sent Floortime Therapy to us.
If you saw Zion from a distance you would not believe that there was anything wrong or different about him. He now interacts with his teachers and is starting to even notice his other classmates. He absolutely loves to go to school each day. And when I pick him up he sees me from down the hall and starts screaming for me. It is the highlight of my day. On Thursday he even said, "hi mama". His first sentence. I am even crying as I write it.
He still has so far to go. Potty Training. Dressing himself. Brushing Teeth. ABC's. 123's. Kindergarten. I hold on to the hope and know that Zion will go to Kindergarten just like any other five year old. I look forward to each day because he continually amazes me.
June 2006
In many ways, Zion is a normal boy. He loves to run, climb, and play. He enjoys stacking blocks and doing puzzles just like many of his toddler peers. Unlike his peers, however, Zion does not seem to be interested in laughing and playing with other kids. Instead, he “zones out” while looking at an aquarium or playing with a string of beads. In unfamiliar situations or new places, he becomes quite uncomfortable. Sometimes he hides his eyes or lies on the floor, sometimes he breaks out into a full tantrum. Also unlike most of his peers, Zion has difficulty communicating. At age three, he only speaks a handful of words and often confuses their context. Sometimes it seems like he is in his own world in some far off place. Other times, it seems like his brain is not “wired” correctly to handle everyday word associations and social cues. Many of Zion’s challenges started as subtle idiosyncrasies during his second year of life, but became noticeable enough that he was diagnosed with Autism at 32 months. We are now on a quest to learn everything we can about Autism and its treatment. In just a few short months, Zion has made great strides with the help of various therapists – one of the most valuable being is his own mom who has regularly scheduled “therapy” sessions several times each day. Zion is speaking new words every day. He starts public preschool this fall and our hope is that he will someday participate in a normal classroom environment. For now, though, we are taking one day at a time as we celebrate small victories like hearing Zion say “mama” in the right context or a trip outside the house without meltdown.
Friday, October 24, 2008
Sarah Palin's Speech on Special Needs Policy
No matter who you are going to vote for in November you must admit that times are changing for the special needs community. Awareness and Education are making a difference. I just watched Sarah Palin, the Republican nominee for vice president, in a news conference saying how children with special needs would get more attention in their administration. She has and will in the future bring to light to the difficulties and triumphs of families who have a child with a disability. She has a child with Down's Syndrome and also a nephew with autism, so she is in the same boat with many of us.
I am so glad that someone is taking notice of how parents of children with a disability are striving to find appropriate care for their child, and mostly they do this all out of pocket because schools don't pay for everything. Jason and I have been fortunate to live in a school district that is very good at trying to fulfill our requests for Zion's education. But what about those parents who live in cities that have inadequate education, no special services, and no-one educated in the profound disabilities of those with autism. It was awesome to hear that with Palin as vice president, education funding would be portable for those who have special needs. Parents would be in charge of their child's education and have the ability to choose the school that is right for their child.
For example, there is a school that specifically treats children with autism in Springfield, that is too expensive for most families. Some profoundly autistic children need to attend this school, but the parents are unable to find funding. Palin says under their administration funding would follow the child to this school even though it is a private school. This is amazing!
Also, in her speech she said that the IDEA would be fully funded under Mccain/Palin. The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
With a fully funded IDEA children would be able to receive services earlier, which you all know is paramount for getting the upper hand with autism. Did you know there are studies coming out that can discern in infants some autism characteristics? Early intervention has been a specific key in how well Zion is doing today. Every parent needs to have infants screened and tested and also have those services provided to them, in order to decrease the most severe side effects of the disability.
I am so glad that someone is taking notice of how parents of children with a disability are striving to find appropriate care for their child, and mostly they do this all out of pocket because schools don't pay for everything. Jason and I have been fortunate to live in a school district that is very good at trying to fulfill our requests for Zion's education. But what about those parents who live in cities that have inadequate education, no special services, and no-one educated in the profound disabilities of those with autism. It was awesome to hear that with Palin as vice president, education funding would be portable for those who have special needs. Parents would be in charge of their child's education and have the ability to choose the school that is right for their child.
For example, there is a school that specifically treats children with autism in Springfield, that is too expensive for most families. Some profoundly autistic children need to attend this school, but the parents are unable to find funding. Palin says under their administration funding would follow the child to this school even though it is a private school. This is amazing!
Also, in her speech she said that the IDEA would be fully funded under Mccain/Palin. The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
With a fully funded IDEA children would be able to receive services earlier, which you all know is paramount for getting the upper hand with autism. Did you know there are studies coming out that can discern in infants some autism characteristics? Early intervention has been a specific key in how well Zion is doing today. Every parent needs to have infants screened and tested and also have those services provided to them, in order to decrease the most severe side effects of the disability.
Whole new goals open up for my son when people in the administration start putting our kids first instead of earmarks and special funding for crazy projects. It might mean the difference of Zion living in assisted care as an adult or Zion realizing his goal by going to college and becoming an astronaut!!!
Zion's quote: “Mama! First brush Zion's teeth, then fly on spaceship!”
Sunday, October 12, 2008
Walk Now for Autism a Success!
I am so excited to tell you that the 2008 Walk Now for Autism was a success. Thanks to all the people that helped put it together and the ones who got out there and walked. The grand total for the event is over fifty-six thousand dollars. That is so cool. I think each year we will see a dramatic increase in the amount we raise. With that money, Autism Speaks is doing great things in furthering the advance in research and knowledge about autism.
On behalf of Zion's Tribe, I want to personally thank you for supporting our team: Whether it be giving money, buying a t-shirt, or sharing your friendship with us. I am happy to say we raised two thousand and fifteen dollars this year for Autism Speaks. I am so excited to know that our team made a difference. As I see Zion thinking and playing more like any other five year old boy, I hope that the money we raised goes to more awareness and goes to advance research into cures and causes. Zion is doing so well because he was diagnosed so early. This awareness will help other parents recognize the symptoms at a very young age and get intervention earlier. That is the key to getting the upper hand on this disorder.
Earlier this week, a neighbor who knows about our personal journey with autism and our involvement with Autism Speaks, stopped by the house. He wanted to know if he could share our contact information with some friends whose daughter has just been diagnosed (at age two). Of course we obliged and I was remained about the difference that Autism Speaks has made in the few short years since we were in that position of receiving what seemed like a hopeless diagnosis. From resources for families such as the "100 day kit" to internationally coordinated research efforts and awareness campaigns. Autism Speaks is making an impact at many levels.
We are so happy to see the dramatic changes that are taking place in our son. He is now fully communicating with us and we can understand most of what he says. His understanding of what we say to him is growing exponentially. He spends most of his day in a regular Kindergarten class doing the same things the other kids do. The Floor-time therapy that we were once striving to learn is now fully applied in our home, like it is second nature. We still sometimes go back to the complete basics of commands and hand over hand manipulation. But as the time goes on our little boy is coming out of his shell. He is a social being, wanting attention and affection more than any of my children. He is a sweetheart!
Anyway, thank you for all your support. We are already excited about next years Autism Walk and are planning some team fundraisers like a trial run or mountain bike race. Keep checking in with the website. God Bless.
Tara
Wednesday, August 6, 2008
Walk Now for Autism
Saturday September 13, 2008 at Jordan Valley Park
Register and Resource Fair Opens - 9am
Walk Begins - 10 am
This is our third year walking in Autism Speaks Walk Now for Autism. We are doing it again because it is so important!!! And we need you to help us...Join our team and walk with us!!!Even if you can not attend the event, you can be a virtual walker and still raise money for the team. We need all the help we can get.
Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.
Did you know…
• 1 in 94 boys is on the autism spectrum
• 67 children are diagnosed per day
• A new case is diagnosed almost every 20 minutes
• Autism is the fastest-growing serious developmental disability
• Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• There is no medical detection or cure for autism
That is why we walk for our son Zion and all the other children out there on the Autism Spectrum. My son Zion turned five this year, and is starting Kindergarten in the fall. Zion has come a long way since he first was diagnosed with Autism at the age of two and a half. He was completely non-verbal and really did not take any direction from us. Then we had a Floortime Specialist start working with him.
During the first session with her Zion was giving her high fives and getting him to do things that we had never seen him do. She also taught us how to work with him. The year after his initial diagnosis was the hardest year of our lives. We had enrolled Zion into Developmental Center of the Ozarks and we were doing Floortime therapy when he got home. Once Zion got into the special education preschool we continued Floortime, but also hired two ABA therapists to work with him four nights a week in our home. Still today we have a therapist come in twice a week to work with him. Our schedules, our finances and our lives revolve around autism. But it has always been an easy choice for us.
When he started preschool he had maybe a five-word count. Today he can tell me his phone number and address, count to twenty, and definitely get his point across. His vocabulary is flourishing and we are amazed everyday as he forms complete sentences and really develops his own personality. We have learned so much on this journey and Autism Speaks was one of our big teachers! Please help us raise money for this valiant cause.
Raise awareness, Raise hope, and Raise an answer.
Join our team. Raise Money. Walk With Zion's Tribe to Raise Awareness.
Click Here.
Join Zion's Tribe Team
Monday, July 14, 2008
Getting Ready for Kindergarten
Today I took Zion to get his Kindergarten Check-up and immunizations. My doctor asked me nicely (because she knows it is a sensitive subject) what I wanted to do today, regarding what shots I wanted to give him. Even though I wanted to just not get any, I realize I don't really have a choice. He must have immunizations to get into Kindergarten. I know some people lie to get around this, but I just don't feel right about doing that. Plus, I believe in immunizations, I just think there are too many at too young of an age.
Anyway, I chose to get the four shots he needed. I figure that he in now five years old and his brain is almost fully developed. So I pray now that there are no side effects of the shots. So far, I haven't seen him act any differently.
When we got into the exam room he laid down on the table and said, "Ahhh, my room!" That shows how often we have been there huh? And when all the nurses came in to help hold him down (for shots), he said, "Hey Girls! What's going on in here?" All of us busted out laughing.
He also thinks that anyone that works at a medical office is a doctor. So he addresses everyone by "Doctor": the receptionist, the nurse assistant, the nurse and finally the doctor. He called our nurse whose name is Summer, "Doctor" repeatedly. She would tell him, "No, I'm not the Doctor, my name is Summer." He would call her Doctor again and she would say they same thing. After the third time he thought about it and said, "Okay, Okay Doctor Summer". Even after they gave him shots he said thank you Doctor's! What a sweetie.
He was just plain hilarious today! He also gave lots of hugs. He pretty much loves everyone and is just so happy to be with people. He thinks everyone likes him and wants to cuddle with him. I am blessed! I also love our Doctor and her team of nurses!
His Pediatrician told me today, "You guys (Jason and I) are doing such a great job with him. I believe you are reclaiming him!" That meant so much to me. She has been in our lives and saw Zion go from completely non-verbal, no receptive language, bad eye contact, major sensory issues to the sweet little boy he is now. She was the one who first diagnosed him and referred us to first steps at age two. She is on top of her patients and I appreciate her so much!!! Anyway, hearing that was awesome. We have worked so hard! It has been our parental focus and our families focus for three years now. And we have and are seeing tremendous results!
School starts in one month. I can't believe he is going to a neuro-typical kindergarten. We have made some major progress!!!
Anyway, I chose to get the four shots he needed. I figure that he in now five years old and his brain is almost fully developed. So I pray now that there are no side effects of the shots. So far, I haven't seen him act any differently.
When we got into the exam room he laid down on the table and said, "Ahhh, my room!" That shows how often we have been there huh? And when all the nurses came in to help hold him down (for shots), he said, "Hey Girls! What's going on in here?" All of us busted out laughing.
He also thinks that anyone that works at a medical office is a doctor. So he addresses everyone by "Doctor": the receptionist, the nurse assistant, the nurse and finally the doctor. He called our nurse whose name is Summer, "Doctor" repeatedly. She would tell him, "No, I'm not the Doctor, my name is Summer." He would call her Doctor again and she would say they same thing. After the third time he thought about it and said, "Okay, Okay Doctor Summer". Even after they gave him shots he said thank you Doctor's! What a sweetie.
He was just plain hilarious today! He also gave lots of hugs. He pretty much loves everyone and is just so happy to be with people. He thinks everyone likes him and wants to cuddle with him. I am blessed! I also love our Doctor and her team of nurses!
His Pediatrician told me today, "You guys (Jason and I) are doing such a great job with him. I believe you are reclaiming him!" That meant so much to me. She has been in our lives and saw Zion go from completely non-verbal, no receptive language, bad eye contact, major sensory issues to the sweet little boy he is now. She was the one who first diagnosed him and referred us to first steps at age two. She is on top of her patients and I appreciate her so much!!! Anyway, hearing that was awesome. We have worked so hard! It has been our parental focus and our families focus for three years now. And we have and are seeing tremendous results!
School starts in one month. I can't believe he is going to a neuro-typical kindergarten. We have made some major progress!!!
Tuesday, July 1, 2008
Summer School is Over
Last Friday was Zion's last day of summer school. It lasted about a month. He was in a neuro-typical, average kindergarten setting and he did amazingly well. He had his floor-time therapist with him two days out of the week and a para for most afternoons. Mornings though he was on his own. The biggest obstacle that he seemed to deal with was falling asleep. I tried to remedy the situation by getting him in bed by eight pm, but nothing helped. He kept falling asleep in the afternoons.
The Early Education Program for special needs was only a half day so this was the first time he has been gone all day. It just wore him out. When I would go and pick him up from school it looked like he had been through the war. I usually got wonderful reports, but the second to last day when he was offered a wet wipe for his hands, he pulled down his pants in the classroom and used the wipe on his bottom. Oops! Can't do that in school! So we will have to work on that. (I found out right when I got home that he was sick to his tummy and had diarrhea, poor baby).
So the plan for kindergarten is to try to do it on his own for the first two weeks and then we are going to ask for a revaluation and see if he is doing good, or needs extra assistance. I asked the Kindergarten Summer School teacher and she said he did better when someone was there pushing him to work. I hope we won't have to fight this point and they will be able to find someone quickly to fill this spot.
So that's the update. No summer school so we get to sleep in everyday. Well, except Zion. He has an internal clock that wakes up way too early.
The Early Education Program for special needs was only a half day so this was the first time he has been gone all day. It just wore him out. When I would go and pick him up from school it looked like he had been through the war. I usually got wonderful reports, but the second to last day when he was offered a wet wipe for his hands, he pulled down his pants in the classroom and used the wipe on his bottom. Oops! Can't do that in school! So we will have to work on that. (I found out right when I got home that he was sick to his tummy and had diarrhea, poor baby).
So the plan for kindergarten is to try to do it on his own for the first two weeks and then we are going to ask for a revaluation and see if he is doing good, or needs extra assistance. I asked the Kindergarten Summer School teacher and she said he did better when someone was there pushing him to work. I hope we won't have to fight this point and they will be able to find someone quickly to fill this spot.
So that's the update. No summer school so we get to sleep in everyday. Well, except Zion. He has an internal clock that wakes up way too early.
Friday, May 30, 2008
Night Terrors
Oh my gosh! It used to happen all the time but we had a reprieve for probably six months. It has started again. Night Terrors, Night Mares and just waking up in the middle of the night and wanting to sleep with us.
The Night Terrors are so scary. We usually hear Zion screaming, it scares us awake. Then we hear his feet on the wood floors. Jason or I jump out of bed and find Zion running from the other end of the house, screaming, and looking behind him. It almost looks like he is running from something. He doesn't even seem to see us. It scares me to death. I almost feels like there is someone in my house that he is running from.
The Nightmares consist of him just being scared to go to sleep. He always wants the light on. So the house is practically lit up like a Christmas Tree at night. I like for it to be completely blacked out when I am sleeping, so when he sneaks into our room at night and doesn't shut the door behind him, it leaks in a sun ray of light into my bedroom and wakes me up. I can't go back to sleep like Jason can, so last night I stared at my ceiling for two hours until I finally fell back to sleep for thirty minutes when my alarm went off.
He is so sweet and cute. I want to protect him, but when I have such a lack of sleep my inner beast comes out. I get so frustrated with him. I really have to control my temper. I wish he would just sleep like my other kids: Through the night without a peep.
Here is a great article describing what I am talking about with night terrors.
http://special-needs.families.com/blog/night-terrors-how-to-help-your-child
The Night Terrors are so scary. We usually hear Zion screaming, it scares us awake. Then we hear his feet on the wood floors. Jason or I jump out of bed and find Zion running from the other end of the house, screaming, and looking behind him. It almost looks like he is running from something. He doesn't even seem to see us. It scares me to death. I almost feels like there is someone in my house that he is running from.
The Nightmares consist of him just being scared to go to sleep. He always wants the light on. So the house is practically lit up like a Christmas Tree at night. I like for it to be completely blacked out when I am sleeping, so when he sneaks into our room at night and doesn't shut the door behind him, it leaks in a sun ray of light into my bedroom and wakes me up. I can't go back to sleep like Jason can, so last night I stared at my ceiling for two hours until I finally fell back to sleep for thirty minutes when my alarm went off.
He is so sweet and cute. I want to protect him, but when I have such a lack of sleep my inner beast comes out. I get so frustrated with him. I really have to control my temper. I wish he would just sleep like my other kids: Through the night without a peep.
Here is a great article describing what I am talking about with night terrors.
http://special-needs.families.com/blog/night-terrors-how-to-help-your-child
Thursday, May 29, 2008
The IEP Process
If you don't know what an I.E.P is then you probably don't have a child with a disability. An I.E.P is a Individualized Education Plan. It is the guideline or plan that the school has to work through for the education of your son or daughter. Every child with a disability must have one.
Zion had his Kindergarten I.E.P. meeting today. I was surprised to see all the people there. We had his teacher and therapists from his preschool and all the new teachers and therapists, the process coordinator, his floor-time therapist and even the principle of his new school. I have never had a principle come to an I.E.P. before, I was pleasantly surprised.
We reviewed what the neuro-psychologist submitted on Zion and then what the scores were for the tests the school did. His IQ has increased to a 65. Which is still in the mildly retarded range. He has no clue about abstract thought though. He can not pull much random information out of his head without a choice or prompt. We will be working on this all summer.
The I.E.P. Consists of the schools plan on how Zion will be placed in Kindergarten and the amount of minutes he will get of special services: speech, occupational, and developmental. He will continue getting 60 minutes of speech. 30 Minutes of OT. He will also have his developmental therapist hopefully twice a week. He will be in special education class only 30 minutes out of the day. They have Zion starting out on his own in Kindergarten. He will not have a para (aide) working with him other than when he is in the special education classroom. This scares me to death. I can imagine Zion in a classroom and the teacher telling the children about math, or reading and Zion preoccupied with the faces of the other children: Or staring out the window. His preschool had five students in it, and three teachers. So he always had someone prompting him to work.
The team said that the I.E.P. was fluid, meaning that it can change if Zion does need extra services, but I am just worried that he will check out or regress before we get that accomplished. What if he gets too far behind and then needs a para. to help him catch up! It may be that my fear is totally unwarranted, Zion may do marvelous and this may be the step he has needed. I pray that this will be the case.
I guess we will see how it goes. Jason and I are excited to see if he flies in Kindergarten.
Zion had his Kindergarten I.E.P. meeting today. I was surprised to see all the people there. We had his teacher and therapists from his preschool and all the new teachers and therapists, the process coordinator, his floor-time therapist and even the principle of his new school. I have never had a principle come to an I.E.P. before, I was pleasantly surprised.
We reviewed what the neuro-psychologist submitted on Zion and then what the scores were for the tests the school did. His IQ has increased to a 65. Which is still in the mildly retarded range. He has no clue about abstract thought though. He can not pull much random information out of his head without a choice or prompt. We will be working on this all summer.
The I.E.P. Consists of the schools plan on how Zion will be placed in Kindergarten and the amount of minutes he will get of special services: speech, occupational, and developmental. He will continue getting 60 minutes of speech. 30 Minutes of OT. He will also have his developmental therapist hopefully twice a week. He will be in special education class only 30 minutes out of the day. They have Zion starting out on his own in Kindergarten. He will not have a para (aide) working with him other than when he is in the special education classroom. This scares me to death. I can imagine Zion in a classroom and the teacher telling the children about math, or reading and Zion preoccupied with the faces of the other children: Or staring out the window. His preschool had five students in it, and three teachers. So he always had someone prompting him to work.
The team said that the I.E.P. was fluid, meaning that it can change if Zion does need extra services, but I am just worried that he will check out or regress before we get that accomplished. What if he gets too far behind and then needs a para. to help him catch up! It may be that my fear is totally unwarranted, Zion may do marvelous and this may be the step he has needed. I pray that this will be the case.
I guess we will see how it goes. Jason and I are excited to see if he flies in Kindergarten.
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