Monday, August 31, 2009

Need some equipment?

Hey everybody- I've got a pair of walking wings and a set of pedi-wraps that I'm getting rid of. I'd send them to the D.I, but it's likely that they won't know what they are, or what to do with them. If you're interested, send me an e-mail and you can have them. I've included pictures of both below.
I know the walking wings have been posted about before. They simply strap around the middle of your child and have 'handles' for you to hold onto to help keep your little one upright. It's a one size fits all item. Ours has been very gently used. They look and feel brand new.

Pedi-wraps go around the legs. They are made of fabric but have metal or something inside to make them stiff. They act as a brace to help weak little legs stay up and stay straight. Ours are purple. They've been used once or twice in therapy and are otherwise brand new. I can't see a size on them, but I think they must be about the smallest size as they are about 12 inches (maybe a tad bit longer) in length. M.K. used them while trying to strengthen her standing muscles. They kept her legs from buckling under her.

Saturday, August 22, 2009

Hey Girls. My HOLY COW post@

Communication is kind of a problem in this house. I think there are so many times that there are sometimes when the frustration of our lack of communication is so non existent that I can't help but feel some what sorry for myself. And it isn't me that can't communicate!

A glimpse into what I mean before I get to the holy cow part: Yesterday Tyler got up at the butt crack of dawn. Like 3 am. Not kidding. He was happy, mom um no! He had PT and OT yesterday as well which is a total throw of his schedule. He is not that set on schedules where he freaks. In fact I am not even sure he knew it was not the right day. What threw him off was the new contraptions he is to wear. He only had to have them on an hour. While getting on his shoes he was crying and crying and crying. His dad got him calm and the trip to PT was not as bad as I had anticipated. He was fine. He wouldn't let me leave him at PT which is abnormal but otherwise he was fine. He walked for Rachel and played his game for Jackie. He was allowed to take his shoes/braces off on the way home.

He played all day with Corine ( his respite lady) and we knew hew as exhausted. He fell asleep on our bed way late. We woke him up at 6 pm and bed time is at 8. He is a bear when he wakes up then compound his lack of verbal skills and you can only imagine the frustration he has. Dallas and I together couldn't figure out what he wanted. Finally we got him to sign SOMETHING. He wanted water, pool and something else. But he signs PULL not POOL. But it means the same thing to his ears.

So needless to say, communication is huge.

His speech is getting cut in Utah and he has been out of speech here for about a month. It was so hard to get use to the idea that he won't have it. He needs to talk. He needs the therapy.

While we were waiting to get our braces I thought I would go through the " Can you say this game?" We have been super working on just the basic sounds like Ba, Da, ta.. you know the stuff your 9 month old says.

He will say Ma or mom fine, and we FINALLY got him to say Ba. It was huge. We made a huge deal out of it. We let him be the praise junkie he is and then we moved on to something new. Those that know him know he won't say Da or dad at all unless it is by sign. Sign is fine. It is nice to see he KNOWS Dallas. But hearing it is way better.

SO, in the middle of a nasty circle K bathroom ( I really really had to go and Bret was still closed) he wanted to touch the floor. I said "ew no. Its Dirty! Can you say Da da Dirty?" SERIOUSLY we do this ALL day. When he wants something we say can you say "Fo fo food." I am sure people think we are NUTS. He looked at me and smiled and said Da. I gave him the praise junkie YAY and asked again. And again, and again. I finally called Dallas but he didn't answer and was super excited.

I was afraid he would pull a Tyler and NEVER say it again. But sure enough when we got home he said Da. When I would ask him to say Dad he would say Da and sign dad at the same time. It was making his dad BEAM from ear to ear.

So HOLY freaking cow! He has a new sound.

Signs and sounds he is currently making: A glorious LIST for YOU! ( the big words IE computer are all signs or approximations of signs)
who ( like owl talk who who!)
T sound
S sound
Computer ( Dallas LOVES this one)
all done
yummy( this one is just a sound he makes)

I think that is it for now. As you can see it is not extensive but it is a START and we love that he is progressing no matter what the speed!

* This was posted at my blog so you get a repeat*

BUT..... on a happy note. We are moving back to Utah. That's right ONE WEEK till we touch down in Utah county! Not sure how my hubby will do in Utah county but I am so excited. We have a new preschool that is just opening and hopefully we can get it all started and set up quickly!

Monday, August 17, 2009

It's been a long time!

I haven't posted on here in such a long time. I thought summer would give me more time to blog and keep up with the cyber world, but with all three boys home... it has been nuts!

My little Josh is doing pretty good right now. He had his PEG tube placed on May 29th and has had some small problems with it, mainly with granulation. He then had the conversion done to a mini-button on July 29th. He came home a lot more sore than I thought he should and within a couple days had granulation started again. We got that under control then the skin started to do this weird thing and bleed and the hole got bigger... it was a nightmare. He was hurting alot and screamed through all feedings and dressing changes. After taking him into our pediatrician and not really getting anywhere, I demanded an appt with someone down at Primary Children's. Our GI doctor was out of town at this point... that was our problem. So we got another doc to agree to see him in between surgeries. He was diagnosed with a staph infection at that point. The doc looked and said he did not have granulation at that point. We got started on antibiotics and within 24 hours the granulation came back. UUUGGHH!!! It has been so frustrating. The staph infection is looking almost gone so we are making progress, but it has been rough. He has spent many (too many to count) sleepless nights. At least his weight gain had been what they wanted to see with the G-tube in.

But on the more positive side, Josh mastered the stairs!! We have been working on the stairs with his physical therapist since January! He could go up them 3 months ago, but he just could not get the down part. It is all part of his dyspraxia. But it all just clicked last week and he went up and down all by himself. We were able to remove the gate for our stairs and he can now just go up and down when he wants instead of waiting for me to help him. It's been an exciting thing for us. I knew the mom's on here would understand how exciting this is. I have told a couple people who don't know Josh very well and they look at me like I am crazy for being so happy he can go up and down. But we partied here for him!!

I hope all is well with all of you mom's and you are getting ready for another school year to begin. It's been a nice summer, but I am ready for school. I can't provide the same structure my autistic son needs at home, and we have had so much together time this summer.... we need a break! Good luck with the challenges I know you all face this fall and I am thinking of all of you!

What do you think? Inappropriate or not?

I have to bounce something off of you all. I'm having hormonal issues, so I can't tell if things that are bugging me really should be bugging me or not. Know what I mean? There's a particular issue that I think is really stupid. But maybe it's just me. Maybe I'm out of line, and should have more of a heart. Let me know what you think. I'll try to leave out any personal feelings as those may be clouding my judgement as well.

We've had M.K. in an animal therapy program for the past several months. It's a non-profit, volunteer run organization. When we signed up we were told it would cost x amount of money. We were encouraged to find a community sponsor to pay the fee, just to get the word out about the program and make people aware.
Last week, one of the volunteer therapists got a hold of the parent e-mail list. I don't believe the people in charge know about it. She sent an e-mail to all of us parents. She started out with the line "I want to address something that has been bothering me about all of you." Then continued to tell us about how the person in charge has sacrificed so much to run this program - mortgaged their house twice and is $30k in debt because of it. And this therapist further believes that because of this, we should all be paying more because the payment asked for isn't covering the costs.

I think much of my reaction has to do with the way it was presented. The first line put me on the defense immediately. But I also kind of feel like when I pay what is asked and take my child to therapy every week, that I shouldn't be given a guilt trip for doing that and be asked to pay more money because of someone else's a)lack of financial foresight or b)desire to keep the costs low for us families. I don't want to feel guilty about taking her to therapy. ya know? I have enough to deal with. Am I out of line here? Should I be feeling so sad for the one in charge and trying to scrape up extra money that I don't have, out of guilt?
I think it's kind of inappropriate for the therapist to take things into her own hands and first of all speak for the program with out the knowledge of the director, or to talk to us parents like she did. It seems to me that a director who has been running this program for several years would know the costs involved, and probably has her reasons for doing things the way she does-whether it puts her in debt or not. It also seems out of line to come back to your clients after they have paid, and ask for more money. I wonder if the therapist understands the costs involved with having a special needs child, or if she's donated any money to the program herself......

I don't know. I'm always grateful for the therapy we receive and for the therapists who give it. It's always so nice to have someone take an interest in helping your child. I want to keep being blissfully ignorantly grateful now, but I'm bothered by this. and I don't want to do the therapy again next year. I'm curious to hear your opinions though.

Wednesday, August 12, 2009

Second DAFO...what do you think?

Okay, so we went to JT's Physical Therapist's today.  I have been kind of worried about how his gait has changed the last few months.  His left foot and leg have been the problem side in the past and he already has a DAFO on that side.  Lately he has been walking on his toes on his right side.  It looks like he is trying to make it easier to just swing his left leg up without catching his toes.  I have heard of "tippy-toe" walking and I knew it was a reason to get DAFOs.  So I guess I wasn't completely surprised when it was suggested we get one for his right leg as well.

I hate to give him something else you know?  I really hate the idea of putting a DAFO on his leg that doesn't seem to be affected by his CP.  But I know he won't change his way of walking without some sort of help.  The other option was to get sturdy hiking boots but it is already so hard getting shoes that will fit both feet (the left over the DAFO and the right foot is so skinny even in smaller sizes shoes that are big enough for the left rarely stay on the right)

It was hard to see him walk in the right DAFO she had laying around. Minutes before he was running and showing off, but with it on he was unsure and unsteady, asking for help often...but on the other hand I have never seen him walk so normally, slow, unsteady but it looked RIGHT.  I don't know how to explain it.

I feel like getting the right side would help him.  But I guess it is just saddening.  Does anyone have a suggestion?  Anyone had something like this happen?  Is there another option I am not seeing?  

I hope all of that made sense.  I have had a long day.

Wednesday, August 5, 2009

Hey Everybody,

I just got this e-mail from Jamie. (The Mom whose boy was abused at school) I'm sorry I'm slow in posting it. I just got back into town---She is going to a School Board meeting for Weber County TONIGHT at 6:00p.m. Again, sorry for the short notice. That's my bad. If any of you are interested and able to go, I'm sure she'd appreciate your support. Here is the rest of the e-mail she sent. Valuable information to know.

I would like to share some important information if you could pass it on please. Please let the Mom's know how important it is to be informed on your rights and that of you child. Not just to the extent the school gives you dig deeper! just an FYI they are hiding behind the FERPA laws in our case, (and stating that is why they could not say anything, and why the aide was released) BUT... My son has medical reasons why I should have been told everything according to this!

Personal Knowledge or Observation

FERPA does not prohibit a school official from disclosing information about a student if the information is obtained through the school official's personal knowledge or observation, and not from the student's education records. For example, if a teacher overhears a student making threatening remarks to other students, FERPA does not protect that information, and the teacher may disclose what he or she overheard to appropriate authorities.

The "Health or Safety" Exception – (34 CFR 99.36)

The Department has made three important liberalizations to the section of FERPA which governs how institutions can make use of the "health or safety" exception to FERPA.

No longer will the health or safety exception be "strictly construed" [the old section 99.36(c)]. Instead, section (c) now provides the following three types of useful flexibility:

First, in making a determination as to whether to invoke the "health or safety" exception, institutions may take into account the "totality of the circumstances" pertaining to the safety or health of a student or other individuals.

Second, if the institution determines that there is an "articulable and significant threat" to the health or safety of a student "or any other individuals," it may disclose information from education records "to any person whose knowledge of the situation is necessary to protect" the health of safety of the student or other individuals.

Third, "If, based on the information available at the time of the determination, there is a rational basis for the determination, the Department will not substitute its judgment for that of the educational agency or institution in evaluating the circumstances and making its determination."

Another change occurs in 99.36(a). In connection with an emergency, an institution may disclose personally identifiable information from an education record "to appropriate parties, including parents of an eligible student [emphasis added], if knowledge of the information is necessary to protect the health or safety of the student or other individuals." The provision for disclosure to the parents, in this context, is new.

In addition, the Department will now require that the institution involved must record, under 34 CFR 99.32(a)(5), the nature of the threat and the parties to whom it disclosed information under the "health or safety" emergency exception.

53A-11a-301.   Bullying and hazing policy
 (3) The policy shall include the following components:
(d) procedures for protecting:
e) procedures for promptly reporting to law enforcement all acts of
bullying, hazing, or retaliation that constitute criminal activity;
 (i) a procedure for referring a victim of bullying or hazing to
(j) involving the parents or guardians of a perpetrator or victim of
bullying, hazing, or retaliation in the process of responding to, and
resolving, conduct prohibited by this chapter;
(k) to the extent permitted by federal and state law, including the
federal Family Educational and Privacy Rights Act of 1974, as amended, a
procedure informing the parents or guardians of a student who is a
victim of bullying or hazing of the actions taken against the
perpetrators of the bullying or hazing;
If they have a policy they didn't follow it.  If they don't have a
policy they are in violation of 53A-11a-301.   
Under IDEA, children with disabilities are entitled to a free and
appropriate education (FAPE) in the least restrictive environment
practicable. In turn, a FAPE includes special education and related
services which are reasonably calculated to permit a child with a
disability to benefit educationally. Consequently, actions taken by
school districts to alleviate an unpleasant bullying situation for a
special education child in order to comply with Title IX's dictates
concerning peer sexual harassment may inadvertently also violate a
child's right to a FAPE by altering that child's placement and/or
programs. In order to prevent placing school officials in this legal
Catch-22, a legal model needs to be developed which ties the overlapping
statutory frameworks of Title IX and IDEA together in one hybrid legal
cause of action. Alternatively, if Title IX's stringent legal standards
for peer sexual harassment cannot be met in a given bullying case even
after incorporating IDEA concepts, IDEA may also provide legal bases for
special education children to obtain monetary damages against school
officials who have failed to protect them from bullying, which, in turn,
has violated that child's right to a FAPE under IDEA.

Sunday, August 2, 2009

Social Skills Class

Marshall started a social skills class at his OT's office. They have been trying to get him in the class for over a year now but they always had it on Thursday afternoons at 4pm and there is NO WAY that could work for me. Even if it weren't 1/2 hr North of where I live, I still couldn't do it. So now, I'm thrilled that it will be every Friday at 10:30am until Sept. 18th. They will work on his communication skills, which will be so nice.

Today at church, he was asked a question by our Primary President. (The Primary is the children's organization. It's where they go to classes with other kids their age..kind of like Sunday School for other churches.) She asked him if he went to see the new temple that had been built. He just stared and stared at her. I had to go ask him questions and try to get him to answer them but he had no idea at all what she was asking. He never really answers questions. He is usually lost in his own world during church. I think he just turns inside to deal with the stress.