Input needed on Letter to School

[admin]

Lenni, that is very much like the letter I wrote last year "she's high risk, but let her participate in everything". Well the school district didn't see it that way. They didn't allow her to use the regular playground when everyone was outside. They didn't allow her to be in gym. The "high risk" portion scared the pants off them and they treated my daughter like a pariah.

So my suggestion to you is to define in advance how you want the school to react and rephrase the letter a little differently. In other words - if you are only asking for some accomodation, then tell them that she needs help with the circle dances and with the falling concept. Ask if there is an attendant / aide available to just keep a watchful eye on her for things like that. Define specifically what things she can and cannot do for gym and explain that she just can't do certain things so pushing her to do them won't work either. Tell them that she's a sensitive child probably more so because of her injury and her scar and you are asking for compassionate understanding.

Lenni, there is no way a school can completely protect our children. EVen if they are not allowed to play together, even if they have an attendant. Our kids have brittle bones and they have malpositioned joints and any little thing can cause a problem. It's the truth I've had to learn the hard way. And we can't be fearful about the what if's. I've learned that the only way to survive the worry is to just let it go.

This is why I feel that it's important to inform to a certain extent but not to instill any fearful words, because any words that invoke fear will be placed on your daughter's back for the school year. It's a liabilitiy issue in their mind. I'm just talking out of experience. Our last year was just hell (can't mince words on the experience!)

So my advice is to focus on the positive and on being differently-abled needing some sensitivity, a watchful eye and a modification to certain tasks.

You are in Canada right? Do you have IEP or 504 plans in the educational system? All of this can become part of those plans. You can also have a meeting with her teacher(s) and explain it all in a personal way in which you can soften any fears they may have.

Best of luck.

[tylergsmom]

Here's a copy of my letter that I sent to my son's school this year. They were thrilled that I took the time to explain it to them. I gave one to his teacher, the office has one on file and gave one to his after school program. They have not restricted him on the playground or any other activity, but he is also in a private school. They are not under the same rules as a public school. Good luck! I'm sure everything will be just fine. August 23, 2004

Layton Christian Academy
2352 E. Hwy 193
Layton, Utah 84040

RE: Tyler Gorup

Dear Layton Christian Academy Staff:

I am writing to you today to inform and educate you on Tyler’s disability, Erb’s Palsy. First, let me give you a little background on Tyler. He is a very active, fun loving, sensitive six-year old. He has a wonderful personality and seems to bring a special something to everyone that enters his life. Tyler attended Hillfield Elementary for kindergarten. While he had a great teacher, the environment was not what we wanted for Tyler. Thus, coming to the decision to enroll him at LCA.

Tyler was diagnosed at birth with Erb’s Palsy of his right arm. Erb’s Palsy is a result of a brachial plexus injury which is caused by excessive pulling during the birthing process. The brachial plexus is a network of nerves. It conducts signals from the spine to the arm and hand. These signals cause the arm and hand muscles to move. (Brachial means arm, and plexus refers to a network of nerves.) Because of the injury his right arm has limited use and function.

Tyler underwent reconstructive muscle surgery this summer at Texas Children’s Hospital in Houston, Texas. Over the next few months the use of Tyler’s arm should improve drastically. He will never have 100% use of his arm, but hopefully the surgery will have had a significant, positive outcome.

I have enclosed some information to help you better understand the disability. It is important for you to know that Tyler does not require any special assistance most of the time. Tyler may need help with activities such as putting on his jacket or tying his shoes, but nothing that requires the school to make any special accommodations. Tyler knows what he can and cannot do. However, it is important to us that his teacher’s are aware of his disability. Hopefully, once you have read the enclosed document, you will start to understand how his disability works. If you would like more information please do not hesitate to call myself or his father. You may also find some helpful information at ubpn.org. This is a wonderful website dedicated to people and families affected by this type of injury. Thank you for taking the time to read this.

Sincerely,

Laura M. Gorup

[dmom]

Lenni,

I think the above suggestions are great.

Regarding your description of surgery, you might want to just boil it down to layman's terms so they can grasp the important points -- for example, "Ashley had surgery to fix her shoulder last March because it was dislocated. In order to keep the shoulder in place, she is not allowed to hang on anything." Specifics on what to do and what not to do, keeping it simple and understandable, will help the school, I should think. When you start speaking "BPI" (i.e. muscle-tendon transfers and the like), sometimes the person who doesn't understand the injury gets lost and confused.

Maybe bullet points on do's and don'ts? Like, "Ashley can do the following: x, y, z. She cannot do the following: x, y and z." Including the UBPN info is great.

I'd also follow up to arrange a meeting with the teacher and principal, so you can reinforce your letter with verbal instructions and convey your concerns with a face and a voice. Go over the info with them and answer any questions. By doing that, you're also conveying to them what concerned and involved parents you are!

Good luck to you!
Janet

[admin]

Hey,

I took some liberties with your letter that follows. And I would also suggest that you offer a more specific check list. In recently placing my daughter I generated one that I have also shared just as an example. I also made a modified copy of the UBPN statement regarding kids and school that I found enornmously helpful.

>>>>

Greetings from Ashley’s Parents, George and Lenni Porter.

With great excitement, our Ashley will soon be placed in your classroom. While in general she is a typical child, she also has a disability: an injury of paralysis to her [left/right] arm inflicted at birth. Specifically, she suffered a little-known Brachial Plexus Injury (BPI). If the Brachial PLexus Injury is unfamiliar to you, we will write briefly that it is the result of her delivering OB exerting too ... [I would provde the UBPN as a site for more information, ans I wouldn’t write about Ashley's surgical history because it is not only private, but too much for a lay-teacher to absorb. Save the details for a parent-teacher meeting where you can read the teacher's level of interest..]

In order to provide Ashley with more movement, she underwent corrective surgery; at some point you may notice that she has a rather large scar on her right forearm. This surgery has offered great promise toward Ashley’s recovery. Yet, she will receive ongoing medical evaluation to further more her recovery. Thus she may be absent from school somewhat more often than other children, and she may return to school in recovery from prehaps another surgery.

Having said the above, we hope we have not scared you off. It is not as horrible as it sounds. Ashley is a perfectly abled child with determination and a very good understanding of her own abilities; she can take very good care of herself. Nevertheless, we have big concerns at two levels: Ashley does not fall well and is not able to break her falls. Secondly, many BPI children are prone to shoulder dislocations. Ashley is quite brave and curious. She will try all activities. Yet during these activities, as to not discourage her or draw too much attention to her, she needs close yet discreet supervision. For example, when engaged in bilateral activities – where she may be stressing both of her arms – she will require assistance to hold the hand of another, to reach for that higher higher or awkward place, etc..

As parents, the bracial plexus injury was entirely new to us. It took us some time to recognize those occasions when Ashley engaged in a vulnerable activity. Very much we appreciate that you will need some time as well. Very fortunately, also enrolled with Ashley are two little girls that she trusts dearly and they are Cassidy Safurik and Sierra Ashton-Hopkins. As you become more familiar with Ashley’s needs, you may want to buddy Ashley up with either of these girls. They know how to help her with her arm and Ashley is comfortable with that.

Otherwise, you’ll see Ashley is a very shy little girl, focused and thoughtful and loves to help others just for a smile. We are very proud of her and wish you all a wonderful year together. If ever you have a question or a concern please call and we will be delighted to help or even just talk.

Yours truly,


George and Lenni Porter

>>


>>

Greetings,

Our Ashley is enrolled in our school! We are very excited. In our cover letter, we spoke of our concern for Ashley with regard to falling and shoulder dislocation. That concern is indeed great. There as also other matters that we would also like to share with emphasis.

With regard to Ashley’s physical care, recall that Ashley has paralysis in her [left/right] arm and during her attendance she may depart from school to undergo surgery and then return to school highly vulnerable and with a very significant splint or brace.

With greater text from the United Brachial Plexus Network later, following is an abbreviation of Ashley’s physical needs in a school environment as one inflicted with a Brachial Plexus Injury to her [right/left] arm:

1. Foremost, I ask that the teachers and even the students, once they understand Ashley's injury, constantly yet discreetlly remind Ashley to "USE BOTH ARMS." USE BOTH ARMS has been the mantra in our home since Ashley was about one-year old. She understands what it means, and does not feel punished by that reminder.

2. Please provide Ashley with a Cubby (storage) area that she can reach.

3. Ashley is a very messy eater. While she can use a fork and spoon, she prefers to eat with her [right/left] hand.

4. When asked to draw, color or write, Ashley will get frustrated quickly because she cannot support the paper with her [left/right] arm.

5. ABSOLUTELY no pulling or tugging at her [left/right] arm. If there is a game or a structured process that involves hand-holding by a child, then only Ashley's [right/left] hand should be held. Thus, No Red Rover, no Tug-Of-War, yet if those games are pursued Ashley should not feel isolated...

6. If the water fountain is [left/right] handed, she will need help to take a drink.

7. Please apply sunscreen on her [left/right] arm as it is particularly sensitive to the sun. We will gladly provide the sunscreen.

8. Ashley is potty trained, but she has lots of problems with zippers and buttons. And she also has alot of trouble getting on and off the potty; she'll put her hands ALL OVER the toilet. Once on the potty she is not well balanced, and she will pee-pee outside of the bowl. Please be sure that her hands are washed thorough after using the potty.

9. Students should understand Ashley's difference. With that, there should not be any teasing or ridicule.

10. The stairs are a very big deal. With her injured arm, she will reach for the banister if it is on her [left/right] side. But she doesn't have the strength to support a fall with a grasp from the right. Ashley should use stairs with a [left/right] banister on ascend and descend of stairs, otherwise she will need supervision but not help.

11. If she should fall, she cannot break it properly. And she cannot protect her face from anything on the [left/right]. We understand that all children of Ashley’s age will fall. For the moment, our Ashley is learning in PT/OT how to fall and protect her face better. Until that lesson on her part is well learned, we ask that you examine and question her particularly in such an event.

12. Any activity that involves sitting on the floor, crawling, climbing, Ashley must be required to not only use both hands, but she must do those things with both of her hands, flat and open.

13. If you ever see Ashley permitting her arm into a "passivity": her arm resting on her side at a 120 degree angle; her arm in her lap while she is sitting at a table; dragging her arm while she walks or runs; her arm tucked under her body while she is on the floor resting, then you need to encouragel her to move her arm and use it as appropriate.


Otherwise these are more general, yet relevant and important guidelines, as borrowed from the United Brachial Plexus Network, www.ubpn.www:

"Most children with brachial plexus injuries have difficulty lifting their affected arm up over their head or even above shoulder level, causing difficulty in dressing and grooming. Some children develop strategies for coping with most situations; however, others may require assistance with putting on clothing and outerwear like jackets, shoes, boots, gloves and hats. Tying shoes, buttoning and zipping clothing can be especially challenging to these children.

The child may have difficulty using the restroom. For example, pulling underwear, pants and tights up and down can be quite time consuming if the child's grasp is weak or elbow function is poor. Parents teach their children adaptive strategies to manage the best they can. There are children with brachial plexus injuries, however, who require assistance for considerable time even though they prefer to be as independent as possible and may find it embarrassing to ask for assistance. These children may need discreet help.

If a child's naturally dominant arm is damaged, he/she adapts by using the non-dominant hand. A right-handed child, in other words, must adapt by becoming a left-handed person when the right arm or hand is affected by paralysis.

Carrying heavy objects or wearing a backpack may not be advised because it might overstress the injured limb or overuse the dominant limb. It would be very helpful for a child with a brachial plexus injury to have an extra set of books at home so that they can avoid carrying a heavy weight to and from school.

Many children with brachial plexus injuries have difficulty with fine motor skills. Simple things such as cutting, coloring, and even handwriting are more difficult for them and may take longer to master. They may not be able to hold a paper in place because they don't have the requisite strength in their affected arm to do so. One solution may be to place the paper onto a clip board. Other challenges may include using a ruler, compass, protractor, or computer. Extra time may be required for the child to complete the task.

Caution is advised for children with brachial plexus injuries involved in playtime, physical education or recreation. Physiological imbalance may affect the child's sense of balance and gross motor coordination. Supervision is recommended for some activities such as climbing or swinging from playground equipment. In many cases, the affected shoulder is underdeveloped and/or deformed and a fall or jerking of the arm can cause dislocation. In extreme cases a BPI child cannot break a fall because of the flaccid limb and injuries to the head can occur. Physical fitness tests may need to be adapted. Occasionally, children with BPI also suffer from damage to the diaphragm which could affect the time and distance they can run. The child's parents or occupational therapist will advise you if this is likely to be a concern.

One of the most frustrating situations for those affected by brachial plexus injuries can be lunch or snack time! Opening lunch boxes, a lid on a Tupperware container, Ziploc bags, pudding, yogurt, milk cartons or snack bags usually requires two hands. For children who purchase school meals, carrying a tray can be prohibitive because grasping both sides of the tray to support its weight can be difficult. Some children may not be able to perform a "sawing" action if the meal purchased needs to be cut into smaller pieces. Some students with brachial plexus injuries will need assistance with tasks that require two hands.

Depending on which arm is injured, the student with a brachial plexus injury may need assistance boarding or getting off of the school bus. Help may be needed with the seat belt, if applicable. The bus driver should be made aware of the injury so that assistance is given properly during any bus evacuation drills."

[Lenni]

Thank you so much for the replies, I will work on it some more!

Lenni

[CW1992]

Lenni, I thought your letter sounded great.
I personally have never written a letter to any teachers because I did not feel it was necessary. I waited until the teacher conferences and then discussed their questions and my concerns because by this time they had already gotten to know my child. I think that YOU know best since all school systems are so different.
I hope Ashley has a great year,
Christy

[Carolyn J]

BUMPING UP fOR Amanda.

HUGS all around,
Carolyn J

[JamieMarie'smommie]

Thank you carolyn.

Amanda

[Tanya in NY]

This is what I did to make it all "teacher/parent friendly" in my opinion. I made a booklet with Amber's picture on the front and basically introduced my daughter through the booklet...her favorite color, favorite book, favorite food, information about her injury, a few things (minimal information) about her areas where she become frustrated or we are concerned about (such as on the playground/gym class, zipping clothing, and so on), our phone number, and things of that nature. This was just the introduction. I then wrote a more specific list to discuss at length in the IEP/504 meeting with the OT, teacher, and CSE chairperson. That is when the specifics came up. During that meeting is when I found out I had to get a written prescription provided from the pediatrician in order for the teacher or nurse to put sunblock on Amber's arm in order to CYA for them, and that there was a paper that the BPI specialist had to fill out specifying which activities Amber could/could not participate in during gym class (all activities were listed that the teacher covers on the paper and he had to just check yes or no). I brought copies of all my information to discuss for every person present at that meeting along with pictures of Amber for them to see. I felt that a brief introduction worked in the beginning and then getting down to the nitty gritty in the meeting worked out well for us. I did this in preschool and kidergarten so far.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

[Danismom]

Lenni!
Hi there! I haven't spoken to you in quite awhile.
Judging byt he date of the letter, I assume it's sent. I hope it was well received by her school and they are sensitive to Ashley's needs. Dani has a hyper-fembot for a PE teacher, but I made it pretty clear when she advised me that "Dani just doesn't seem like she's trying", I would NOT tolerate that attitude and had to educate her on BPI. She's better now about it, but there will always be folks that just don't get it. *sigh*
Dani & I are going to see the BPI team at Children's today for her yearly. I have some new questions now though. I signed Dani up to see Dr Nath last summer when he was in Seattle and he told Kevin (her dad) that her arm is partially dislocated and she needs a triangle tilt asap. Needless to say, that was contrary to what we'd been told here. So I am going in armed with new questions. Also, Dani has lost 45% of her hearing in tbe last yr!! She wears hearing aids now and we don't know if it will stabilize of get worse. Scary for her. I posted a question about it on here asking if anyone else has had this happen.
I hope you guys are well. Loved seeing you that time in Steveston. Let me know if you'll be back and we'll do lunch.
Take care,
Kim