A few weeks ago, Tim and I decided that we would not waste the money and buy presents for Nate and Noah to unwrap at Christmas. Every year, it's the same thing.....we buy presents we hope they will like and wrap them. Then, on Christmas morning, we fight with Nate and Noah to take enough interest to open them. We can get them to open 1 or 2, but I usually end up opening them. When they do open a present, they do not look surprised or interested. Then, there is no guarantee that they will play with the new toy. Usually, they won't.
I am wrapping presents and thinking of the gifts that Nick will have to open. He will be surprised and excited. I am starting to feel guilty that I am not wrapping gifts for the other two boys. I know it is silly. I am more sad about their disinterest in Christmas than they are. When you have a young child, everyone says "Christmas will be so much fun." Well, it's not. It's difficult to be excited for Christmas when two of your children don't even know it exists.
Maybe they understand the true meaning of Christmas. They do not get caught up in the gift giving and receiving. They have never watched a toy commercial and turned to me and said, "I want that." All they want is to live their lives and be happy.....and jump on the trampoline, and swim, and eat pop-tarts. There is nothing that I can put in a box under the tree that can hold a candle to the trampoline or indoor pool. They know that we love them and we know that they love us. So, as I sit here typing this, I am repeating to myself, "I am not running out to Toys R Us, I am not running out to Toys R Us."
Sunday, December 23, 2012
Monday, December 10, 2012
Lopez Waiver....
So, a few months ago, I received a letter from the state telling me that Noah had been granted the Lopez Waiver. Yeah!! I was so excited and relieved! It was often referred to as the "Golden Ticket."
However, my joy was very short-lived. Before we could access the waiver, we had to submit a plan and it had to be approved.......
Noah's case manager told us we had to access HCY services (nursing). This didn't make any sense to me. Noah does not have any medical issues....he's not tube fed or have any mobility issues. Noah's issues are all behavioral. So the back and forth began.....
A couple of weeks ago, I had discovered that some other families had accessed their waiver without using the HCY services. Now, I was just mad. Why them and not us? In one of my many emails with my case manager, I suggested that the members of the committee that grant approval come out to the house and spend some time with Noah themselves. Surprisingly, no one took me up on that offer.
I even went so far as to have the woman who gives the approval for nursing come out to the house to see Noah. She was appalled by his behaviors and did not have the good manners to hide it. She finally just told me, "It's free babysitting, you should just use it." Seriously???? I want more that that for my child.
Emails continued to go back and forth for weeks. On Friday, it looked like we were going to have to try the nursing and chart any set backs he was having and appeal in a few months. I received an email from a man on the committee that grants approval. I decided to call him myself. I explained our situation to him and stressed how expensive all the co-pays were and that autism could eventually bankrupt us. He actually listened and said, "You don't want HCY, you want HCY med-behavior." I didn't know that there was such a thing. My case manager had never mentioned this to me. He told me he would talk to my case manager about this and get back to me today.
This afternoon, he sent me an email telling me that Noah's plan had been rewritten and he would recommend it for approval. I called him back asking for a start date of 12/12 and not 1/1. We had waited for this long enough. He emailed me back a few minutes later letting me know that Noah's waiver plan could begin 12/12.
I did it! I feel like I fought the system and won!
Noah will now be staffed form 8am to 8pm on Saturday and Sunday, 6:30am - 8:30 am and 4:00 pm - 7:30 pm on Thursdays with no co-pays. I will also have extra hours to staff him during holidays and summer break without co-pays. This will help alleviate the financial strain of all the co-pays.
Finally....someone listened to me......
Wednesday, November 28, 2012
If you win the lottery......
If you win the Powerball Lottery tonight and need an investment for all that money, I have a plan. I have a dream for a residential facility for adults with mental disabilities.
I envision a dormitory-type facility. The top floor would have single rooms that share a jack-and-jill bathroom. The rooms would be large enough to house a queen size bed, a dresser and chest of drawers, small refrigerator, microwave, table with 2 chairs, love seat, recliner, and a television. The bathroom would have a vanity, toilet, and a bathtub (which can have a bench or stability bar if necessary). There would also be an office at the end of the hall for staff.
The next two floors could have single rooms that have their own bathrooms. These rooms would be smaller and more expensive than the rooms with a shared bathroom. These rooms would be large enough to hold all the other furniture as the upstairs rooms, but may only hold a double bed. Also, to save space, the bathrooms may only have a stand up shower instead of a bathtub.
The ground floor will be the hub of activity. It would house a commercial kitchen and dining room with several tables. The kitchen would be professionally staffed and serve 3 meals a day. There would be four therapy rooms; one for speech, one for OT, one for music therapy, and one for physical therapy. We would employ full-time therapists to meet the needs of the residents. A recreation room would house a large tv with video games, a couple of couches, tables and chairs for games, and shelves of books. An exercise room would have various exercise equipment and an indoor trampoline. A snack shop would be available for the residents to purchase snacks to practice their money skills. We would have a heated pool in the back, an adult size playground, trampoline, and basketball hoops. There would also be a physician's assistant on duty at all times. The director would have an office along with a conference room.
The basement would house a commercial laundry room for residents and a separate laundry room for the facility. It would also have storage facilities for the residents and the therapists. The staff locker room would be downstairs as well.
The facility would be fully staffed 24 hours a day. A resident can have 1-1 staff if needed. A resident would have scheduled activities. These could include speech therapy, OT, music therapy, working in the kitchen, doing chores in the facility, having a supported job outside of the facility, taking group or individual outings. Each resident will have a staff member who is in charge of his/her "team" and daily schedule.
I know that the trend is moving towards special adults living in houses that are staffed 24/7. I think this would be more beneficial because so many opportunities for socialization would be available. There would also be so many activities to keep everyone active and making progress.
This is my dream living situation for Nate and Noah. All I need is money, an architect, and a large plot of land.
I envision a dormitory-type facility. The top floor would have single rooms that share a jack-and-jill bathroom. The rooms would be large enough to house a queen size bed, a dresser and chest of drawers, small refrigerator, microwave, table with 2 chairs, love seat, recliner, and a television. The bathroom would have a vanity, toilet, and a bathtub (which can have a bench or stability bar if necessary). There would also be an office at the end of the hall for staff.
The next two floors could have single rooms that have their own bathrooms. These rooms would be smaller and more expensive than the rooms with a shared bathroom. These rooms would be large enough to hold all the other furniture as the upstairs rooms, but may only hold a double bed. Also, to save space, the bathrooms may only have a stand up shower instead of a bathtub.
The ground floor will be the hub of activity. It would house a commercial kitchen and dining room with several tables. The kitchen would be professionally staffed and serve 3 meals a day. There would be four therapy rooms; one for speech, one for OT, one for music therapy, and one for physical therapy. We would employ full-time therapists to meet the needs of the residents. A recreation room would house a large tv with video games, a couple of couches, tables and chairs for games, and shelves of books. An exercise room would have various exercise equipment and an indoor trampoline. A snack shop would be available for the residents to purchase snacks to practice their money skills. We would have a heated pool in the back, an adult size playground, trampoline, and basketball hoops. There would also be a physician's assistant on duty at all times. The director would have an office along with a conference room.
The basement would house a commercial laundry room for residents and a separate laundry room for the facility. It would also have storage facilities for the residents and the therapists. The staff locker room would be downstairs as well.
The facility would be fully staffed 24 hours a day. A resident can have 1-1 staff if needed. A resident would have scheduled activities. These could include speech therapy, OT, music therapy, working in the kitchen, doing chores in the facility, having a supported job outside of the facility, taking group or individual outings. Each resident will have a staff member who is in charge of his/her "team" and daily schedule.
I know that the trend is moving towards special adults living in houses that are staffed 24/7. I think this would be more beneficial because so many opportunities for socialization would be available. There would also be so many activities to keep everyone active and making progress.
This is my dream living situation for Nate and Noah. All I need is money, an architect, and a large plot of land.
Thursday, November 22, 2012
Always thankful.....
While I am not thankful for autism, I am thankful for the arsenal that I have to fight it.
1. The Autism Bill- requiring the insurance company to pay for in-home ABA.
2. Behavior Intervention Services- providing the staffing for said ABA. Team Hill is Fabulous! They have changed my life!
3. Action for Autism- the organization that raises money to help families pay for therapies for their children with autism. They help me pay the co-pays and the boys' camp fees.
4. ARC- Association for Retarded Citizens....yes, they need a new name. They provide the weekend camp that Nate attends and Noah will also go this spring. They also ran Teens in Motion, the summer camp that Nate attended this year.
5. The Home Health section of our health insurance- when the OT and Speech therapists come to the house and it's billed through Home Health, there is no co-pay. Please share this with other families! The boys receive 50 OT visits and unlimited speech through the Home Health section of our insurance. It makes life so much easier, we don't have to take them anywhere and we don't pay a $20 co-pay each time.
6. Vicki- every family should have a Vicki. There are not enough words to explain how she helps us and not enough words to express our gratitude.
7. The ADA Act- when anyone takes the boys to an activity that charges admission, we pay for the boys, but their staff get in free. This saves us a lot of money.
8. Skyzone- kids with autism and their staff member jump free anytime.
9. Therapy Relief- the company that provides our OT and Speech therapists.
10. Special School District- St. Louis County pools their money to provide SSD services to all of the school districts. This way, they can provide better services to kids. Because of this, they have never told me that there isn't enough money to give the boys what they need.
11. Southview School- the school for special kids that Nate and Noah attend. Nate is starting to learn some basic office skills. The boys can stay in school until they are 21.
12. My family- they love the boys unconditionally and celebrate every one of their accomplishments.
13. My friends- they don't pity me...they listen to me cry when I need to without judgement and take me out when I need to get away.
1. The Autism Bill- requiring the insurance company to pay for in-home ABA.
2. Behavior Intervention Services- providing the staffing for said ABA. Team Hill is Fabulous! They have changed my life!
3. Action for Autism- the organization that raises money to help families pay for therapies for their children with autism. They help me pay the co-pays and the boys' camp fees.
4. ARC- Association for Retarded Citizens....yes, they need a new name. They provide the weekend camp that Nate attends and Noah will also go this spring. They also ran Teens in Motion, the summer camp that Nate attended this year.
5. The Home Health section of our health insurance- when the OT and Speech therapists come to the house and it's billed through Home Health, there is no co-pay. Please share this with other families! The boys receive 50 OT visits and unlimited speech through the Home Health section of our insurance. It makes life so much easier, we don't have to take them anywhere and we don't pay a $20 co-pay each time.
6. Vicki- every family should have a Vicki. There are not enough words to explain how she helps us and not enough words to express our gratitude.
7. The ADA Act- when anyone takes the boys to an activity that charges admission, we pay for the boys, but their staff get in free. This saves us a lot of money.
8. Skyzone- kids with autism and their staff member jump free anytime.
9. Therapy Relief- the company that provides our OT and Speech therapists.
10. Special School District- St. Louis County pools their money to provide SSD services to all of the school districts. This way, they can provide better services to kids. Because of this, they have never told me that there isn't enough money to give the boys what they need.
11. Southview School- the school for special kids that Nate and Noah attend. Nate is starting to learn some basic office skills. The boys can stay in school until they are 21.
12. My family- they love the boys unconditionally and celebrate every one of their accomplishments.
13. My friends- they don't pity me...they listen to me cry when I need to without judgement and take me out when I need to get away.
Tuesday, November 20, 2012
People in my house
I am often asked how can I handle always having people in my house. Saturday is the only day that staff is not scheduled to be at the house. On any other day, there can be anywhere from 1 to 5 extra people in the house. My neighbors must think that we throw a lot of parties.
Yes, it gets crowded. Yes, it gets chaotic. Privacy is a thing of the past. However, the outcome far outweighs the inconvenience.
These people have changed our lives. Nate, Nick, and Noah will live much more productive lives thanks to these people. Because of this, I don't complain about the people in my house. We welcome them into our family. We happily set another place at the dinner table knowing that the meal I feed them and their salary doesn't begin to equal their worth.
Yes, it gets crowded. Yes, it gets chaotic. Privacy is a thing of the past. However, the outcome far outweighs the inconvenience.
These people have changed our lives. Nate, Nick, and Noah will live much more productive lives thanks to these people. Because of this, I don't complain about the people in my house. We welcome them into our family. We happily set another place at the dinner table knowing that the meal I feed them and their salary doesn't begin to equal their worth.
Monday, November 5, 2012
Christmas is coming......
The holidays are upon us.....it's a difficult time for us. The boys' schedules are disrupted and there and just so many more people.
Another difficult area for us is gifts. People always want to know what to get the boys for Christmas. For so many years, a lot of money was wasted buying the boys gifts that we thought they should want. Everyone wants to buy the toy that brings squeals of excitement and hours of enjoyment. Unfortunately, that doesn't happen with Nate and Noah. We wasted so much energy trying to apologize to everyone and come up with excuses as to why they weren't excited about the gift and yes, they would spend hours playing with it. We decided that it was time to end the facade.
We realized that the boys enjoy experiences more than toys. They love videos and their IPads. We now ask for ITunes cards and gift cards to their favorite restaurants. This makes everyone happy. The boys don't have the pressure of opening a toy that they won't play with and everyone knows that their money was well spent. Since everyone still wants the boys to open a gift, they wrap boxes of Pop Tarts and other favorite snacks. This also guarantees happy faces when the present is opened. It's also a relief now that my family understands that the boys need to open presents in shifts or they just let me open them instead.
So, I will now get on my soap box. If you need to buy a gift for a child with autism, I am going to give some suggestions.
1. gift cards to restaurants
2. pool together money to buy a therapy item: such as a trampoline, swing, adult tricycle, ipod (there are so many great apps for kids with autism that ITunes cards are always a good idea)
3. pool together money to join an indoor or outdoor pool or gymnastics lessons
4. find favorite videos and or video games
I just purchased a family membership to an indoor wave pool. Nate and Noah will enjoy this much more than the X-Box that we purchased last year.......another lesson learned.
Another difficult area for us is gifts. People always want to know what to get the boys for Christmas. For so many years, a lot of money was wasted buying the boys gifts that we thought they should want. Everyone wants to buy the toy that brings squeals of excitement and hours of enjoyment. Unfortunately, that doesn't happen with Nate and Noah. We wasted so much energy trying to apologize to everyone and come up with excuses as to why they weren't excited about the gift and yes, they would spend hours playing with it. We decided that it was time to end the facade.
We realized that the boys enjoy experiences more than toys. They love videos and their IPads. We now ask for ITunes cards and gift cards to their favorite restaurants. This makes everyone happy. The boys don't have the pressure of opening a toy that they won't play with and everyone knows that their money was well spent. Since everyone still wants the boys to open a gift, they wrap boxes of Pop Tarts and other favorite snacks. This also guarantees happy faces when the present is opened. It's also a relief now that my family understands that the boys need to open presents in shifts or they just let me open them instead.
So, I will now get on my soap box. If you need to buy a gift for a child with autism, I am going to give some suggestions.
1. gift cards to restaurants
2. pool together money to buy a therapy item: such as a trampoline, swing, adult tricycle, ipod (there are so many great apps for kids with autism that ITunes cards are always a good idea)
3. pool together money to join an indoor or outdoor pool or gymnastics lessons
4. find favorite videos and or video games
I just purchased a family membership to an indoor wave pool. Nate and Noah will enjoy this much more than the X-Box that we purchased last year.......another lesson learned.
Thursday, October 25, 2012
3 boys, 3 meetings
In the last 3 days, I have met with all of the boys' teachers. It's been a little crazy.
I wanted to meet with Nate's teacher because we were double booked for Open House and I hadn't met her. I was also concerned when his math work consisted of Nate counting to 100. Nate has been able to count to 100 for about 8 years. He can also count to 100 by 2's, 3's, 5's, etc. I wanted to make sure that his teacher and I were on the same page academically. I want him to start working on alphabetizing. I think this will be a good work skill for him to have. I was happy to hear that she has already probed this skill and we will also work on it at home. Nate's biggest issue at home is the shower. He just stands under the water for as long as he is allowed. He will even stand in a cold shower. We are having a hard time finding something to motivate him to shower quickly. For a while, he was working for a donut. If he did not shower in time, he had to give the donut to Noah. Even that didn't work....
Noah's meeting went much better than I could have imagined. When we talked about last year's concerns, they are no longer this year's concerns. He does not eat non food items. The potty training is almost under control. He has not bit, pinched, or hit anyone at school in a long time. Our concerns now revolve around his personal safety. Since we have so many people in and out of the house, we worry that he wouldn't know that someone could be a stranger. He is so used to listening to adults that we worry that he would just go with any adult that knows his name. We also talked about his lack of focus. We are trying 5 mg of Ritalin in the morning. If this helps, we will add a 2pm dose. Today was his first day, we are crossing our fingers. We also talked about his programming at home. Noah has a waiting goal, and will wait at the table for tokens for up to 2 minutes. His teacher could not believe it. We may have to video it and sent it to her. I also want to give a shout out to Maija, our home ABA analyst. She listened to his new academic goals and had new programs written for him in 2 hours.
We had Nick's Parent/Teacher conference last night. It was a "student led" conference, so Nick did all the talking. He was very nervous and stuttered quite a bit. He is also having difficulty focusing in class, so we are also trying the Ritalin with him again. He was on it a few years ago, but it increased his anxiety so much that it was detrimental. We will keep a very close eye on this to see what our plan should be.
The trampoline has been a wonderful addition to the backyard. The swing frame is being delivered today. Our backyard is becoming an OT's dream. Not only did I buy a swing, but also a glider to put in the swing frame. The glider requires them to stand and swing side to side while keeping their balance. Hopefully, this will help Nate's core strength and posture.
So, we will keep plugging away here in Autismland...........Halloween is not easy for Nate and Noah, so keep your fingers crossed!
I wanted to meet with Nate's teacher because we were double booked for Open House and I hadn't met her. I was also concerned when his math work consisted of Nate counting to 100. Nate has been able to count to 100 for about 8 years. He can also count to 100 by 2's, 3's, 5's, etc. I wanted to make sure that his teacher and I were on the same page academically. I want him to start working on alphabetizing. I think this will be a good work skill for him to have. I was happy to hear that she has already probed this skill and we will also work on it at home. Nate's biggest issue at home is the shower. He just stands under the water for as long as he is allowed. He will even stand in a cold shower. We are having a hard time finding something to motivate him to shower quickly. For a while, he was working for a donut. If he did not shower in time, he had to give the donut to Noah. Even that didn't work....
Noah's meeting went much better than I could have imagined. When we talked about last year's concerns, they are no longer this year's concerns. He does not eat non food items. The potty training is almost under control. He has not bit, pinched, or hit anyone at school in a long time. Our concerns now revolve around his personal safety. Since we have so many people in and out of the house, we worry that he wouldn't know that someone could be a stranger. He is so used to listening to adults that we worry that he would just go with any adult that knows his name. We also talked about his lack of focus. We are trying 5 mg of Ritalin in the morning. If this helps, we will add a 2pm dose. Today was his first day, we are crossing our fingers. We also talked about his programming at home. Noah has a waiting goal, and will wait at the table for tokens for up to 2 minutes. His teacher could not believe it. We may have to video it and sent it to her. I also want to give a shout out to Maija, our home ABA analyst. She listened to his new academic goals and had new programs written for him in 2 hours.
We had Nick's Parent/Teacher conference last night. It was a "student led" conference, so Nick did all the talking. He was very nervous and stuttered quite a bit. He is also having difficulty focusing in class, so we are also trying the Ritalin with him again. He was on it a few years ago, but it increased his anxiety so much that it was detrimental. We will keep a very close eye on this to see what our plan should be.
The trampoline has been a wonderful addition to the backyard. The swing frame is being delivered today. Our backyard is becoming an OT's dream. Not only did I buy a swing, but also a glider to put in the swing frame. The glider requires them to stand and swing side to side while keeping their balance. Hopefully, this will help Nate's core strength and posture.
So, we will keep plugging away here in Autismland...........Halloween is not easy for Nate and Noah, so keep your fingers crossed!
Friday, October 12, 2012
I used 5 of the strategies that night
The speaker at last Monday's staff meeting was an Autism Specialist from Special School District. The Autism Walk is tomorrow, so I thought the timing of the Autism Specialist was perfect.
She had a lot of information. I really appreciated her telling us that autism is not curable.....no matter what Jenny McCarthy says. She also stressed that autism is a communication disorder, not a behavior disorder. Unfortunately, she only had an hour, so she was forced to just run through her information. She had told us we would do have some interaction parts, but it ended up just being "sit and get."
At the end she gave up 10 strategies to use with kids with autism. I can tell you that we use all 10 in this house. Also, many of my friends in the meeting were able to recall the strategies being used with the boys so they had good examples in their minds.
I am grateful that our administration recognizes the need for this inservice. These kiddos are coming......
She had a lot of information. I really appreciated her telling us that autism is not curable.....no matter what Jenny McCarthy says. She also stressed that autism is a communication disorder, not a behavior disorder. Unfortunately, she only had an hour, so she was forced to just run through her information. She had told us we would do have some interaction parts, but it ended up just being "sit and get."
At the end she gave up 10 strategies to use with kids with autism. I can tell you that we use all 10 in this house. Also, many of my friends in the meeting were able to recall the strategies being used with the boys so they had good examples in their minds.
I am grateful that our administration recognizes the need for this inservice. These kiddos are coming......
Thursday, September 20, 2012
Moving in the right direction.....
We had Nick's IEP today. Everyone says that he has transitioned very well. He also is not the most immature student on the team....that surprised me. He's had a few bumps in the road. He was in tears twice when he was tardy and the two fire drills have not gone well.
I'm not surprised about the tears with being tardy. One of the tardies was caused by his binder falling apart. The other was caused by him staying and working on something. No big deal...to us. HUGE deal to him. If the rule is, "no tardies", then Nick can not be tardy. He's such a rule follower, sometimes to a fault. (On the good side, he won't drink until he is 21.) The teacher assured him that he was ok, but he just got himself all worked up.
The difficulty with the fire drills surprises me. By 5th grade, he was handling fire drills very well. For the first fire drill they allowed him to go outside early with one of the aides. I'm not sure that was a great idea. When they warned him about the next one, he perseverated on was when he was going to leave early with the aide.
We did drop his SSD academic lab. He had a class every day with a SSD teacher that gave him structured time to work on homework. We decided that with all the support he receives at home, that he could complete his homework at home. It's so nice to drop services. It means that he is making great progress.
This meeting again reinforced our decision to hold Nick back in the 2nd grade.
I'm not surprised about the tears with being tardy. One of the tardies was caused by his binder falling apart. The other was caused by him staying and working on something. No big deal...to us. HUGE deal to him. If the rule is, "no tardies", then Nick can not be tardy. He's such a rule follower, sometimes to a fault. (On the good side, he won't drink until he is 21.) The teacher assured him that he was ok, but he just got himself all worked up.
The difficulty with the fire drills surprises me. By 5th grade, he was handling fire drills very well. For the first fire drill they allowed him to go outside early with one of the aides. I'm not sure that was a great idea. When they warned him about the next one, he perseverated on was when he was going to leave early with the aide.
We did drop his SSD academic lab. He had a class every day with a SSD teacher that gave him structured time to work on homework. We decided that with all the support he receives at home, that he could complete his homework at home. It's so nice to drop services. It means that he is making great progress.
This meeting again reinforced our decision to hold Nick back in the 2nd grade.
Thursday, August 16, 2012
Where did the summer go?
I can't believe we are back in school already. Where did the summer go?
Nate and Noah started school Monday. Nick started school Wednesday. It has been a long week with many changes.
Nate is now in the High School hallway at school. He is in a new hallway, a new room, and has all new teachers and aides. He has handled the transition well. The morning staff comes a little later, so Nate has to get his breakfast independently before they arrive. Wednesday, he was on fire. He woke up and I told him to make his pancakes. I went back in my room and left him alone. When I went back to check on him, he had his pancakes cooked (in the microwave), milk poured, and his banana. He even had his napkin! I don't think he could have done this a year ago.
Noah is in the same room with the same teacher this year. We are very happy with this. He has so many new demands and staff members at home, that it's nice to have some consistency at school. This week has worn him out! I just went downstairs to help Ruth while Noah was in total melt down. He finally pulled it together and is finishing his speech session at the table with a bowl of ice cream. She is making him work for each bite. He is working very hard to get his tongue out to lick the spoon.
We have had many staff changes at home. Because the boys get attached to the home staff, these changes can be challenging. It's also difficult to get someone new used to the flow of the house. Noah seems to make it his personal mission to test a new staff member multiple times to see if he/she really means business.
The insurance company is still very stingy with the hours. The days of having both boys staffed from 4:15 - 7:15 are over. We are trying to get Noah more funding from the state. We submitted a huge packet in hopes of getting a Lopez Waiver. This will give us many more hours of staffing that will be paid for by the state. We have our fingers crossed.......
Nick started middle school this week. He is now in the same building as Tim. He spent a lot of time this summer practicing his locker! I think that having Tim in the building is helping to alleviate some of the stress. The middle school is quite large and involves switching classes every hour. We hope he will expand his social circle (ok, it's 2 friends...not really a circle) this year.
The house is still in its perpetual state of crazy. Between football and the string of therapists that come into the house, it's quite a bit to take in. It's a good thing I have ice cream........
Nate and Noah started school Monday. Nick started school Wednesday. It has been a long week with many changes.
Nate is now in the High School hallway at school. He is in a new hallway, a new room, and has all new teachers and aides. He has handled the transition well. The morning staff comes a little later, so Nate has to get his breakfast independently before they arrive. Wednesday, he was on fire. He woke up and I told him to make his pancakes. I went back in my room and left him alone. When I went back to check on him, he had his pancakes cooked (in the microwave), milk poured, and his banana. He even had his napkin! I don't think he could have done this a year ago.
Noah is in the same room with the same teacher this year. We are very happy with this. He has so many new demands and staff members at home, that it's nice to have some consistency at school. This week has worn him out! I just went downstairs to help Ruth while Noah was in total melt down. He finally pulled it together and is finishing his speech session at the table with a bowl of ice cream. She is making him work for each bite. He is working very hard to get his tongue out to lick the spoon.
We have had many staff changes at home. Because the boys get attached to the home staff, these changes can be challenging. It's also difficult to get someone new used to the flow of the house. Noah seems to make it his personal mission to test a new staff member multiple times to see if he/she really means business.
The insurance company is still very stingy with the hours. The days of having both boys staffed from 4:15 - 7:15 are over. We are trying to get Noah more funding from the state. We submitted a huge packet in hopes of getting a Lopez Waiver. This will give us many more hours of staffing that will be paid for by the state. We have our fingers crossed.......
Nick started middle school this week. He is now in the same building as Tim. He spent a lot of time this summer practicing his locker! I think that having Tim in the building is helping to alleviate some of the stress. The middle school is quite large and involves switching classes every hour. We hope he will expand his social circle (ok, it's 2 friends...not really a circle) this year.
The house is still in its perpetual state of crazy. Between football and the string of therapists that come into the house, it's quite a bit to take in. It's a good thing I have ice cream........
Wednesday, June 20, 2012
It's never enough
A few weeks ago I met a person with an autistic child. Of course, the conversation turned to therapies....what has worked and what hasn't. When I asked this person about what they were doing outside of school, this person's reply was that the child gets enough therapy at school and doesn't need any help at home.
I was shocked by this statement.
I don't understand.
How is that enough?
I am never satisfied with the amount of therapy that the boys get. I am always pushing for more, more, more. Anyone who has been in an IEP for my children knows this. Sure, they are making progress, but I want more. Not all therapy has to be at the table and not any fun. I remember when the neurologist told us to take the kids everywhere and they would always get something out of it. Sometimes, it's just practice waiting in line. Every experience is an opportunity for learning for these boys.
I push for more because time is not our friend. I push for more because I want them to have happy, safe, and productive lives. I push for more because I won't always be here to look out for them..........
I was shocked by this statement.
I don't understand.
How is that enough?
I am never satisfied with the amount of therapy that the boys get. I am always pushing for more, more, more. Anyone who has been in an IEP for my children knows this. Sure, they are making progress, but I want more. Not all therapy has to be at the table and not any fun. I remember when the neurologist told us to take the kids everywhere and they would always get something out of it. Sometimes, it's just practice waiting in line. Every experience is an opportunity for learning for these boys.
I push for more because time is not our friend. I push for more because I want them to have happy, safe, and productive lives. I push for more because I won't always be here to look out for them..........
Nate's summer
Enough of the pity party....Nate is having a great summer. I was able to enroll him in a program called Teens in Motion through ARC (Association of Retarded Citizens). ARC needs a better name, but that's another point.
His camp is 8 weeks long and 9-4 Monday -Friday. He is staffed one-to-one and has two outings each day. One of the outings is a volunteering experience and the other is a fun outing. Travis went with him until noon the first two days to help his "buddy" get to know Nate and his abilities. Nate loves it! He is tired, but his overall mood is much more pleasant.
He has volunteered at the Magic House, Racanelli's Pizza, Bethesda nursing home, and Stages Theater. He has had fun outings to Forest Park, the Science Center, and the movies. Yes, Nate sat through a movie....that is quite a feat.
I am so grateful that we live in a city that provides these opportunities for special kids. We are hoping that his independence will improve and he will learn some new skills. He's also enjoying his time out of the house and away from his brothers. He's really growing up......
His camp is 8 weeks long and 9-4 Monday -Friday. He is staffed one-to-one and has two outings each day. One of the outings is a volunteering experience and the other is a fun outing. Travis went with him until noon the first two days to help his "buddy" get to know Nate and his abilities. Nate loves it! He is tired, but his overall mood is much more pleasant.
He has volunteered at the Magic House, Racanelli's Pizza, Bethesda nursing home, and Stages Theater. He has had fun outings to Forest Park, the Science Center, and the movies. Yes, Nate sat through a movie....that is quite a feat.
I am so grateful that we live in a city that provides these opportunities for special kids. We are hoping that his independence will improve and he will learn some new skills. He's also enjoying his time out of the house and away from his brothers. He's really growing up......
Sunday, June 17, 2012
Do people realize how lucky they are?
Sometimes Facebook depresses me. Don't get me wrong, I love seeing all the posts and pictures from friends. However, sometimes it just is hard. Seeing all the fabulous Prom pictures is hard. Seeing all the pictures and posts from fabulous vacations is hard. Do people realize how lucky they are?????
Most people don't plan their day according to how many staff members will be at the house.
Most people can take their kids to a destination more than 4 hours away.....that's my time limit with Noah in a car. I can only listen to the "oooohhhhh" in a closed space for so long. I am afraid that if we tried to fly somewhere, we would be removed from the plane.
Most people can still go somewhere with their kids without their spouse.
Most people have a list of summer activities to do with their kids........I'm sure it's a lot longer than mine.
Most people aren't still assisting their 14 year old son in the restroom. Clean up is still an issue.
Most people don't have to tie their 14 year old son's shoes.
Most people don't realize how lucky they are and how incredibly jealous I am...............
Most people don't plan their day according to how many staff members will be at the house.
Most people can take their kids to a destination more than 4 hours away.....that's my time limit with Noah in a car. I can only listen to the "oooohhhhh" in a closed space for so long. I am afraid that if we tried to fly somewhere, we would be removed from the plane.
Most people can still go somewhere with their kids without their spouse.
Most people have a list of summer activities to do with their kids........I'm sure it's a lot longer than mine.
Most people aren't still assisting their 14 year old son in the restroom. Clean up is still an issue.
Most people don't have to tie their 14 year old son's shoes.
Most people don't realize how lucky they are and how incredibly jealous I am...............
Friday, June 1, 2012
I'm embarassed to do this.....
I am embarassed to do this, but it needs to be done.
In order to receive financial assistance through Action For Autism, we must raise $150 in pledges for each boy. I would normally just pay it myself (because I don't feel comfortable asking for money), but it will be $450 for all 3 boys. They have helped pay the boys' co-pays for the in-home ABA and sent Nate and Noah to camp.
If you feel inclined to help, I am attaching the link to the donation page on their website. When it asks for compaign, choose "Family Fun Walk". At the bottom in the comments section, please put "Nate, Nick, and Noah Hill". This way we will receive credit for pledge.
I am eternally grateful for your support be it monetary or emotional. I could not navigate this adventure without you.........
Tuesday, May 22, 2012
Nate's Graduation
Nate had his 8th grade graduation yesterday. In the past 5 days, I have attended three different 8th grade celebrations and one high school graduation.
I can tell you that Nate's was very different from the other three I attended. At the other ceremonies, awards were given. There were no awards given out at Nate's graduation. At some of the ceremonies, there was always the question, "Where are you going in the fall?". At Nate's ceremony, no one asked that question. All 12 kids were going to the "High School" hallway at Southview. At the other three celebrations, some students were chosen to speak. At Nate's, some of the graduates can not speak. The other ceremonies were at least an hour long and full of traditions. Yesterday, the ceremony lasted 15 minutes and was very casual.
While there were many startling differences between Nate's graduation and the other ones, there was also one distinct similarity.....proud families. We knew that our students at Southview didn't meet the "academic requirements" to graduate from the 8th grade. We also know that our students don't have the same futures as the students from the other ceremonies. However, that doesn't make our child's graduation any less important. In our hearts, they are just as smart and capable as the other kids. In our hearts, their accomplishments are just as important. In our hearts, our kids are just as important.
We celebrated Nate's graduation. We had 5 family members and 6 members of his team attend. All 11 of us were very proud to see Nate walk across that stage (with little verbal prompting) and receive his certificate.
I can tell you that Nate's was very different from the other three I attended. At the other ceremonies, awards were given. There were no awards given out at Nate's graduation. At some of the ceremonies, there was always the question, "Where are you going in the fall?". At Nate's ceremony, no one asked that question. All 12 kids were going to the "High School" hallway at Southview. At the other three celebrations, some students were chosen to speak. At Nate's, some of the graduates can not speak. The other ceremonies were at least an hour long and full of traditions. Yesterday, the ceremony lasted 15 minutes and was very casual.
While there were many startling differences between Nate's graduation and the other ones, there was also one distinct similarity.....proud families. We knew that our students at Southview didn't meet the "academic requirements" to graduate from the 8th grade. We also know that our students don't have the same futures as the students from the other ceremonies. However, that doesn't make our child's graduation any less important. In our hearts, they are just as smart and capable as the other kids. In our hearts, their accomplishments are just as important. In our hearts, our kids are just as important.
We celebrated Nate's graduation. We had 5 family members and 6 members of his team attend. All 11 of us were very proud to see Nate walk across that stage (with little verbal prompting) and receive his certificate.
Friday, April 27, 2012
Private Practice again.....
Tuesday night's episode of Private Practice did it again. They totally nailed my feelings. I'll give you the synopsis. Addison just adopted a baby boy. Her sister-in-law, Amelia, is pregnant and just learned that the baby she is carrying does not have a brain. Amelia is angry....so angry. She can't look at Addison or her new baby. In this scene, Amelia is saying all the things I wish I had the courage to say 12 years ago. I was told that I couldn't be angry, that I had no right to be angry.
Well, I was angry. I was bitter. After we got Nate's diagnosis, I couldn't look at other kids. It just depressed me. I pulled away from my best friend from high school. She had two typical boys and I didn't. We had been college roommates and in each other's weddings, but I couldn't talk to her. I wanted what she had so badly, that it made me ashamed of myself. It also made me feel like such a failure. Why couldn't I produce a typical child? What did I do wrong?
My friend and I have recently reconnected and had dinner a few weeks ago. We talked about my feelings and she told me that she understood why I had to pull away. She knew that I just needed time. I'm getting there. I like to hear stories about her boys.....their accomplishments, but I still get a pang. At least now I know that that's ok.
This scene is fabulous. You can feel Amelia's pain and hurt for her. I admire her strength and honesty.
Well, I was angry. I was bitter. After we got Nate's diagnosis, I couldn't look at other kids. It just depressed me. I pulled away from my best friend from high school. She had two typical boys and I didn't. We had been college roommates and in each other's weddings, but I couldn't talk to her. I wanted what she had so badly, that it made me ashamed of myself. It also made me feel like such a failure. Why couldn't I produce a typical child? What did I do wrong?
My friend and I have recently reconnected and had dinner a few weeks ago. We talked about my feelings and she told me that she understood why I had to pull away. She knew that I just needed time. I'm getting there. I like to hear stories about her boys.....their accomplishments, but I still get a pang. At least now I know that that's ok.
This scene is fabulous. You can feel Amelia's pain and hurt for her. I admire her strength and honesty.
Friday, April 6, 2012
still angry
A friend and I were talking today about Easter plans and church. I mentioned that I wouldn't be going because I was still so angry about the boys. She corrected me. I was angry about Noah. Not all the boys, just Noah. She was right.
When I was pregnant with Noah, I prayed and prayed that he wouldn't have autism. I was convinced that God wouldn't let it happen again. Twice was one thing, but a third? He couldn't be that cruel. I said these words very often to myself and others. I actually thought that my third child would be able to help Nick care for Nate when they were older. I thought that Nick would have a sibling to play with. I thought everything would be ok.
I still can't let go of my anger. It fuels me in my war. It's what helps my fight for all the help and services that my boys need. I just hope it won't consume me.
Getting Noah's diagnosis broke my heart......and, worse, it broke my faith.
When I was pregnant with Noah, I prayed and prayed that he wouldn't have autism. I was convinced that God wouldn't let it happen again. Twice was one thing, but a third? He couldn't be that cruel. I said these words very often to myself and others. I actually thought that my third child would be able to help Nick care for Nate when they were older. I thought that Nick would have a sibling to play with. I thought everything would be ok.
I still can't let go of my anger. It fuels me in my war. It's what helps my fight for all the help and services that my boys need. I just hope it won't consume me.
Getting Noah's diagnosis broke my heart......and, worse, it broke my faith.
Tuesday, March 20, 2012
Autism Could Bankrupt Us
Nate got into the Teens in Motion program for this summer. That's great! He will have so many experiences and chances for independence. It's $900. I know that is reasonable for an 8 week camp, however....autism is very expensive.
We always try to do what is best for the boys.....meds, therapies, and good doctors. Unfortunately, everything comes at a price.
ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick
OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate
Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)
In-home help-
$11/hour, it varies from 40 to 100 hours a month
Speech-
It's free through the Home Health Care section of our insurance. Please tell everyone you know to explore this avenue.
Tim and I both teach full-time. We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves. When I applied for SSI benefits for the boys, the woman basically laughed at me. We are on many wait lists for financial help, but are not "needy" enough. Organizations like Action for Autism are helping. They pay for one ABA co-pay per boy, per week. They also covered the $350 for Nate to attend Spring Break Camp. St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year. I go through those hours like water.
I know there are some expenses we won't have. I won't be paying car insurance for Nate and Noah. I also won't be sending them to college. However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.
So, gone are some dreams.....bigger house, no. Condo at the Lake, no. Tour of Europe, no. Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.
We always try to do what is best for the boys.....meds, therapies, and good doctors. Unfortunately, everything comes at a price.
ABA-
$120 co-pays/week for Nate
$120 co-pays/week for Noah
$60 co-pays/week for Nick
OT-
$20 co-pay/week for Noah
$20 co-pay/biweekly for Nate
Psychiatrist-
$30 co-pay for each boy every 3 months (or sooner if needed)
In-home help-
$11/hour, it varies from 40 to 100 hours a month
Speech-
It's free through the Home Health Care section of our insurance. Please tell everyone you know to explore this avenue.
Tim and I both teach full-time. We make too much money to receive help from the government and don't have enough to cover all the expenses ourselves. When I applied for SSI benefits for the boys, the woman basically laughed at me. We are on many wait lists for financial help, but are not "needy" enough. Organizations like Action for Autism are helping. They pay for one ABA co-pay per boy, per week. They also covered the $350 for Nate to attend Spring Break Camp. St. Louis ARC reimburses me $6/hour for the in-home help for up to 250 hours per boy, per year. I go through those hours like water.
I know there are some expenses we won't have. I won't be paying car insurance for Nate and Noah. I also won't be sending them to college. However, if I had compiled a list of autism expenses since their diagnoses, I think it would rival car insurance and college tuition.
So, gone are some dreams.....bigger house, no. Condo at the Lake, no. Tour of Europe, no. Hello, bigger dreams.....Nate and Noah living in an assisted living facility, yes.
Thursday, March 8, 2012
What's best for kids......
Nate and Noah should not be in a "typical" school. I know this. Tim knows this. Anyone who has met them knows this.
Not all parents know this about their kids. It's a shame. Their kids are sitting in a class and not getting anything out of it. They need an adult with them at all times to "survive" the day. They are sitting through lessons about writing a 5-paragraph essay. However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay. Not all kids need to know the names of all the Presidents. Sitting in classes and not learning anything is such a waste of their time. Don't parents know that when you have a special needs child time is your enemy?
Putting kids in an alternate educational setting does not limit their potential. It does just the opposite. It opens so many doors for them. My kids are learning skills that will help them survive the "real world." They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability. Some things aren't important for everyone to know.
I don't know why parents are so opposed to putting their kids in an alternate educational setting. I think that one of the worst things a parent of a special child can be is unrealistic. I have always asked the boys' teachers and therapists to be very honest with us. Putting our heads in the sand does not help our boys. Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help. What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?
Unfortunately, there is a stigma on "special schools". When my boys got into the "special school", my friends and I went out to celebrate. I felt like I had gotten them into Harvard. For my boys, it is their Harvard.
Not all parents know this about their kids. It's a shame. Their kids are sitting in a class and not getting anything out of it. They need an adult with them at all times to "survive" the day. They are sitting through lessons about writing a 5-paragraph essay. However, they struggle to write a paragraph and will never hold a job that requires a 5-paragraph essay. Not all kids need to know the names of all the Presidents. Sitting in classes and not learning anything is such a waste of their time. Don't parents know that when you have a special needs child time is your enemy?
Putting kids in an alternate educational setting does not limit their potential. It does just the opposite. It opens so many doors for them. My kids are learning skills that will help them survive the "real world." They will never be able to write a 5-paragraph essay, but they may be able to hold a job that is commiserate to their ability. Some things aren't important for everyone to know.
I don't know why parents are so opposed to putting their kids in an alternate educational setting. I think that one of the worst things a parent of a special child can be is unrealistic. I have always asked the boys' teachers and therapists to be very honest with us. Putting our heads in the sand does not help our boys. Telling a parent that their special child is doing well when they are barely staying in the room or understanding what is going on does not help. What will these parents do when their child "graduates" from the "typical" high school and does not have any real world skills?
Unfortunately, there is a stigma on "special schools". When my boys got into the "special school", my friends and I went out to celebrate. I felt like I had gotten them into Harvard. For my boys, it is their Harvard.
Monday, February 13, 2012
Nick's Valentines
Nick was sitting at the table tonight writing names on Valentines for his class party tomorrow. He suddenly got up and ran down the hall. I asked him where he was going and his reply was, "You'll see." I followed him just in time to see him coming out of Nate's room. I asked him if he made a Valentine for Nate. His answer, "Yes, and I hid it under his pillow. It's a surprise."
This is just another example of how much Nick worships his older brother. It has never mattered to Nick that he has surpassed Nate in so many ways. All he knows is that his older brother is the best.
I am sometimes amazed by his adoration for Nate. I know he loves his brother, but this is more than that. He truly accepts Nate for who he is....and who he isn't. He has never complained when Nate has been the cause of a sudden change of plans or making us late for something. He doesn't make fun of Nate when he is having a meltdown or exhibiting some strange behavior. When we moved Nate out of the room with Nick, Nick was a little sad. When I asked him why, he told me that he would miss all the conversations that he and Nate would have when they went to bed. Now, you know as well as I do, that Nate never said a word. However, Nick is convinced that Nate was a very active participant in these conversations.
I only hope that when Nick is a teenager, he still thinks that Nate is as awesome as he does now. I hope that peer pressure or outside influences won't tarnish his love for his older brother. Just think what a great place the world would be if everyone thought like Nick.......
Now if I could only get Nick to feel the same way about his little brother........
This is just another example of how much Nick worships his older brother. It has never mattered to Nick that he has surpassed Nate in so many ways. All he knows is that his older brother is the best.
I am sometimes amazed by his adoration for Nate. I know he loves his brother, but this is more than that. He truly accepts Nate for who he is....and who he isn't. He has never complained when Nate has been the cause of a sudden change of plans or making us late for something. He doesn't make fun of Nate when he is having a meltdown or exhibiting some strange behavior. When we moved Nate out of the room with Nick, Nick was a little sad. When I asked him why, he told me that he would miss all the conversations that he and Nate would have when they went to bed. Now, you know as well as I do, that Nate never said a word. However, Nick is convinced that Nate was a very active participant in these conversations.
I only hope that when Nick is a teenager, he still thinks that Nate is as awesome as he does now. I hope that peer pressure or outside influences won't tarnish his love for his older brother. Just think what a great place the world would be if everyone thought like Nick.......
Now if I could only get Nick to feel the same way about his little brother........
Friday, February 3, 2012
It's Letter Day
It's Letter Day in St. Louis. Today is the day that incoming Freshman get a letter letting them know which private high school they will go to next year. Nate should be in 8th grade. He should be getting his letter today......not that Tim would agree to private school....but all the same. It's another childhood ritual that my child is not able to participate in.
The kids at school were very excited about it today. They couldn't wait to get home and check the mail. I know that Tim would never agree to send the boys to a private school, but it would be nice to have the option. For the first time I realized that Nate is their age. It's so easy to think he's younger, since, developmentally he is.
Here are more rites of passage that autism has robbed me of:
first boy/girl party
calling a girl for the first time
driving Nate and a date to the movies and either sitting 5 rows behind them or waiting for them in the lobby
teaching Nate to always open the door for girls
watching Nate play football while Tim is his coach
studying and practicing for his driving test
teaching him how to drive a stick shift
looking at collages
studying for finals
helping him with his homework
I knew it would be hard for me when Nate got to be the same age or older than the students I am teaching. Before, I didn't really have anything to measure the amount of divide between Nate and other kids his age. Now that I do, it kinda sucks.
Maybe I should file a civil suit against autism. Can I put a price tag on what autism has taken from us? Is it possible to define your dreams in dollars and cents? Would any amount of money fix my broken heart?
I think I will always be mourning the loss of the child I thought I was going to have.
The kids at school were very excited about it today. They couldn't wait to get home and check the mail. I know that Tim would never agree to send the boys to a private school, but it would be nice to have the option. For the first time I realized that Nate is their age. It's so easy to think he's younger, since, developmentally he is.
Here are more rites of passage that autism has robbed me of:
first boy/girl party
calling a girl for the first time
driving Nate and a date to the movies and either sitting 5 rows behind them or waiting for them in the lobby
teaching Nate to always open the door for girls
watching Nate play football while Tim is his coach
studying and practicing for his driving test
teaching him how to drive a stick shift
looking at collages
studying for finals
helping him with his homework
I knew it would be hard for me when Nate got to be the same age or older than the students I am teaching. Before, I didn't really have anything to measure the amount of divide between Nate and other kids his age. Now that I do, it kinda sucks.
Maybe I should file a civil suit against autism. Can I put a price tag on what autism has taken from us? Is it possible to define your dreams in dollars and cents? Would any amount of money fix my broken heart?
I think I will always be mourning the loss of the child I thought I was going to have.
Sunday, January 15, 2012
A non-preferred outing
The insurance company is stipulating that Noah have a non-preferred family outing once a week. So, today I took Nate and Noah to Kohl's, Macy's, and then lunch. Of course, I also took Brittany and Travis.
We practiced Noah's proximity to me in the stores. He did pretty well. He can handle walking with me with or without hand holding. It's the waiting in line that is difficult. We had to wait at both Kohl's and Macy's. He only slipped away from us once and didn't do any dropping to the floor. He actually went into a dressing room and tried on a pair of pants without any problems.....a first.
We worked on Nate's ability to keep up while walking in the mall. He is soooo slow. He helped by carrying my bag. He had a small meltdown in Macy's. I took Noah into the dressing room and Nate stayed outside with Travis and Brittany. He was not happy with me being out of s sight. Luckily, the store wasn't crowded. He kept yelling, "There's Mommy!". I had to open the door of the dressing room so he could see me to calm him down. That is something we will try again.
We then had lunch at a non-preferred restaurant. When we were walking in the mall, Noah kept saying "I want pizza, I want pizza!". So, we did not have pizza. We went to Qdoba. Noah ate tacos and part of a cheese quesadilla. Nate ordered and paid for his lunch himself. The guy working was very patient while Nate took out his wallet and counted his money.
Since Noah was so good, he deserved a reward. He and Travis bought gummy bears at the candy store. Travis told him, "Gummies in the van.". Noah was on a mission. He walked throu the mall, into Macy's, down the escalator, and to the door. He really wanted his gummy bears. He didn't drop to the floor when we only rode the escalator once. He put his jacket on and zipped it himself. It was quite something to see.
The insurance company is getting tricky. Suddenly, the boys' treatment plans are being scrutinized by someone new. They are now claiming that school hours plus outside therapy hours should not exceed 40 per week. Hmmmmm......this is all new. They want the boys hours to decrease since they have made progress. Don't they realize that they are making progress because the staff is here so much? Someone from UBH needs to live in my house for a week.
We practiced Noah's proximity to me in the stores. He did pretty well. He can handle walking with me with or without hand holding. It's the waiting in line that is difficult. We had to wait at both Kohl's and Macy's. He only slipped away from us once and didn't do any dropping to the floor. He actually went into a dressing room and tried on a pair of pants without any problems.....a first.
We worked on Nate's ability to keep up while walking in the mall. He is soooo slow. He helped by carrying my bag. He had a small meltdown in Macy's. I took Noah into the dressing room and Nate stayed outside with Travis and Brittany. He was not happy with me being out of s sight. Luckily, the store wasn't crowded. He kept yelling, "There's Mommy!". I had to open the door of the dressing room so he could see me to calm him down. That is something we will try again.
We then had lunch at a non-preferred restaurant. When we were walking in the mall, Noah kept saying "I want pizza, I want pizza!". So, we did not have pizza. We went to Qdoba. Noah ate tacos and part of a cheese quesadilla. Nate ordered and paid for his lunch himself. The guy working was very patient while Nate took out his wallet and counted his money.
Since Noah was so good, he deserved a reward. He and Travis bought gummy bears at the candy store. Travis told him, "Gummies in the van.". Noah was on a mission. He walked throu the mall, into Macy's, down the escalator, and to the door. He really wanted his gummy bears. He didn't drop to the floor when we only rode the escalator once. He put his jacket on and zipped it himself. It was quite something to see.
The insurance company is getting tricky. Suddenly, the boys' treatment plans are being scrutinized by someone new. They are now claiming that school hours plus outside therapy hours should not exceed 40 per week. Hmmmmm......this is all new. They want the boys hours to decrease since they have made progress. Don't they realize that they are making progress because the staff is here so much? Someone from UBH needs to live in my house for a week.
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