Been There, Done That

Transcription

1 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms THINGS TO THINK ABOUT WHEN APPLYING TO SCHOOLS/CHOOSING A SCHOOL Mms Say: When chsing a schl, I fund schls that were within clse ranges f large hspitals that have a gd hematlgy department. I think this is imprtant because mst cllege students dn't have cars r the mney fr taxis t take them t appintments. Make sure the schl fits yur child s persnality! If yur child has a smaller sense f cmmunity, a large state schl may nt be right fr them. If they are big thinkers and independent, a large state schl may wrk ut beautifully. Be hnest with yurself n what is best fr yur child yur dream f yur child attending yur alma mater r a Big 12 schl may nt be his/hers. Make sure t visit lts f different schls and the ne they think they want t g t needs t be twards the end f the list fr visits. This will help them keep an pen mind abut pssibilities. Parents als need t keep an pen mind! The schl my sn decided upn was nt at the tp f my list. Hwever, nce we visited I had a cmpletely different view and was able t see the benefits f why it was a great match fr him. Sme ut- f- state schl and private schls may have cmparable tuitin packages t in- state schls be pen t the pssibilities. When chsing a cllege, accessibility was very imprtant. Thrugh campus turs, we were able t chse the flattest campus with the best wheelchair accessibility. Sme f the clleges we visited were very hilly, which wuld have been a significant challenge fr my sn because he uses a manual wheelchair all f the time. The ther cnsideratin was whether the cllege was private r public. We fund the public clleges were much mre pen t accmmdatins (they have t be by law. Private clleges d nt necessary have t prvide accmmdatins). A third item t keep in mind is whether the schl prvides n- campus transprtatin fr mbility- limited students, which can make larger campuses seem mre attractive Hemphilia Federatin f America. All rights reserved. 1

2 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms WHAT ACCOMMODATIONS HAVE YOU PUT INTO PLACE, EITHER ACADEMICALLY OR DAY- TO- DAY? Mms Say: Medic Alert jewelry is a must! Have him explain his cnditin t his rmmate. Meet with the schl clinic s medical directr. If they can make an intrductin with the lcal hspital ER directr, even better! Alert the campus plice t yur child s cnditin if he/she needs factr, smene needs t knw where t find it (say, in their cllege drm). This way they aren t running arund trying t get medicatin shipped in t the hspital. Check in with the schl s Disabilities Office have yur child register even if they have never had accmmdatins befre. This culd be very imprtant if they need t reschedule tests and assignments due t bleeds. Hld yur child accuntable fr ding their infusins ask them t use ne f the infusin apps s that yu are alerted (peace f mind) and s that if needed, they have a recrd f their last infusin at their fingertips in case f an emergency. My sn registered with the Disabled Student Services as sn as he was accepted t the cllege. They wrked with him t put in place accmmdatin plans (mre time between classes, alternative assignments, handwriting assistance, and apprpriate desks in the classrm). He als had special husing accmmdatin fr drm rm placement. Instead f the freshmen drms, he was placed in husing reserved fr upperclassmen that had individual bedrms and bathrms that prvided additinal accmmdatins and privacy (fr infusins). He als filed an Individual Health Plan t dcument what his healthcare needs are. Califrnia has the Department f Rehabilitatin that prvides assistance fr disabled students, either thrugh jb placement r cllege assistance. They have helped prvide additinal assistance fr tuitin and bks, and will help with jb placement nce he graduates Hemphilia Federatin f America. All rights reserved. 2

3 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms IF YOU HAVE A ROOMMATE WHAT DID YOU TELL YOUR ROOMMATE ABOUT YOUR DISORDER? DO YOU INFUSE IN FRONT OF THEM? WHERE DO YOU STORE YOUR SUPPLIES/MEDICATION? WHERE IS YOUR MEDICATION DELIVERED TO YOU ON CAMPUS? Mms Say: I have tld my rmmate in persn abut my disrder. I think this makes it much easier than trying t explain ver the phne r Internet. Als I didn't want t scare her int thinking I was ging be bleeding everywhere all the time, I want t be treated the same as everybdy else nt as a fragile dll. She was very accepting and has been my biggest supprter when I m sick. It is imprtant fr the rmmate and the RA t knw what is ging n. I think that infusing in frnt f thers is a preference yur child will knw what is best. My sn stres his factr in a fridge in his rm. Supplies are stred in his rm as well. I dn't live with traditinal cllege rmmates, and if I did, I certainly wuldn't run arund flapping my gums abut my bleeding disrder t the nearest rmy- I keep my cards clse t my chest in regards t my cnditin. We are still wrking n the factr delivery issue. Our prblem is that we get a 90 day supply at ne time and he des nt have the space t stre all f it. See if yur hmecare cmpany can divide up the rder half t the drm and half t the hme address. Or, plan t take factr t them when visiting. Many universities have limitatins n the size/ number f drm fridges due t fire cncerns. It may be wrthwhile checking with the schl befre mve- in t see if this can be waived fr a resident. Pssibly best t wrk thrugh the n- campus clinic t start the dialgue with the Residence Hall department, since they ll carry mre weight than a randm student. Alternately, the campus clinic/ pharmacy might be willing and able t accept shipments and stre the prduct in their facilities My sn had 3 rmmates his freshman year. He tld them abut his disrder. He had his wn bedrm and kept his factr and supplies in his bedrm. I think he usually infused in his bedrm, but they knew he was ding it. Medicatin was delivered t ur hme and he wuld pick up when he needed mre. (His drm was nly abut 20 minutes frm ur huse). He mved back hme after freshman year as he figured ut it was really t hard n him t be in the drm Hemphilia Federatin f America. All rights reserved. 3

4 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms DID YOU HAVE AN INDIVIDUALIZED EDUCATION PLAN (IEP) IN HIGH SCHOOL? HOW HAS IT HELPED YOU AT COLLEGE? Mms Say: We did nt. Yes. It has helped give him extra time fr assignments if he was experiencing a bleed r hspitalizatin. It has als helped him receive alternative assignments if the class was ding an activity that he culdn t participate in. Fr example, his bilgy class did a field trip t the beach. He was allwed t d an alternative assignment. HAVE YOU HAD A BLEED WHILE ON- CAMPUS OR DURING THE SCHOOL YEAR? HOW HAVE YOU DEALT WITH THAT? WERE YOU ABLE TO ATTEND CLASS? Mms Say: During high schl and int cllege, I have ften bled in public. My frequent nsebleeds are the mst cmmn cause fr me t need t tell thers abut my disrder. While I am smetimes embarrassed abut bleeding in public, I have N data yet but fingers crssed n this ne this keeps me up at night but ultimately it is his respnsibility nw and I ve had t pass the batn. I have cnfidence that he will handle this well but I still wrry! realized that it is just ging t happen and there's nt much I can d t stp it; I can nly change hw I react t it. I try nt t shw that I'm embarrassed, s that thers wh may be ging thrugh similar issues can see that it is nt smething t be ashamed f. Oh yeah many. Usually he wuld just pwer thrugh and g with a bleed (r multiple bleeds). Occasinally has missed a day r tw. When he was in the drm his freshman year, he had a bad situatin (thrat, arm and thigh bleed). He was trying t pwer thrugh but it became critical. He texted me and said he was hurting and sick I knew that was bad because he never tld me anything was bthering him. I went t the drm and fund him with vmit everywhere and nt able t mve. I laded him up in my car and tk him t the ER. Needless t say, he gt admitted t hspital. He never asked his rmmates fr help Hemphilia Federatin f America. All rights reserved. 4

5 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms HAVE YOU TOLD YOUR PROFESSORS ABOUT YOUR CONDITION? HOW UNDERSTANDING HAVE THEY BEEN? Mms Say: I have tld my prfessrs abut my disease, but I made sure t d it prperly. I didn't take up their time after class when mst f them start preparing fr ther lectures; instead I went t them during ffice hurs. I had a quick little nte I had typed up t further explain my disease, s that if I frgt anything the prfessrs wuld have all the infrmatin t keep. This is s imprtant because yu dn't want t be lumped in with the grup f students wh just skip class; the prfessr needs t knw that there will be times yu will miss class and that it's fr a gd reasn. Mst f the prfessrs wrked ut a way fr me t turn in late wrk, which was great. He just stated schl last week but I knw he will nt have a prblem cmmunicating this if necessary. Yes, sme. I dn t think he talks a lt abut his cnditin unless he has t, but he has had a cuple f math prfessrs that wuldn t accmmdate him at first (writing was really hard fr him elbw bleeds) s he had t apprach them. Sme understd, sme didn t. He had t drp ne math class his sphmre year because the teacher wuldn t accmmdate. I ften tell prfessrs in cllege classes s they knw that if I leave class suddenly, it isn't because I'm trying t be rude. I have never had a prfessr be anything less than very adaptable and kind Hemphilia Federatin f America. All rights reserved. 5

6 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms HAS YOUR PEER GROUP ACCEPTED YOUR DIAGNOSIS? HOW MUCH HAVE YOU SHARED WITH THEM? Mms Say: Yes, I shared the entirety f what the disrder is, what I have t d t teat, and hw it affects me daily. Many f my clse friends have health prblems as well, and understand that it is their jb t supprt me and my jb is t tell them when I need additinal help. Nt sure hw much he has shared with his peers. It is pretty bvius there is smething wrng with him (wheelchair, ace wraps, huge bruises), but I dn t knw hw much he really discusses it. He is still friends with his rmmates that he had freshman year, and he talks with peple he meets in class, but he desn t scialize much with anyne frm schl utside f schl. I am mre pen than thers abut my bleeding disrder, particularly because I realize that it desn't make me weaker than anyne else, it just is. When I share my diagnses with thers, I never feel bad; I feel strengthened that I am helping thers becme mre aware abut what I g thrugh. Shrt f keeping a medic alert tag incnspicuusly attached t my car keys, I dn't really tell anybdy abut my having hemphilia, I see it as "brandishing my Achilles heel". Besides, I have enugh life experience and persnality t fill the vids f innate peer curisity. Surely, being brn a bleeder has had a prfund impact n my lifestyle and persnality, but I nly tell peple f the details f my cnditin if we are very seriusly rmantically invlved, r if there is a predictably dangerus situatin cming arund in which I wuld benefit frm having an auxiliary infusin tech trained up. (Fr instance, when I wrked as a wildland firefighter fr the state f Utah, I was frced t divulge the nature f my cnditin t my clleagues, much t my dismay and discmfrt. That being said, if an Incident ccurred in the bnies, I wuld have at least had a fighting chance t get t an E.R. befre cmplicatins arse frm any serius bleeds, and I always carried factr with me, in additin t regular prphylactic dsages Hemphilia Federatin f America. All rights reserved. 6

7 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms HAS YOUR BLEEDING DISORDER AFFECTED YOUR SOCIAL LIFE? Nt at all. I've nly tld clse friends, and kept it n a need t knw basis. S acquaintances knw that if I hit my head r start bleeding it's a bigger deal than it is fr ther peple and I might need help, whereas my friends knw wh t call and what t d when I'm bleeding. WHAT ACTIVITIES OR EXTRA- CURRICULAR ARE YOU INVOLVED IN? I m currently invlved with my University s Quidditch team. In schl bviusly sprts were a prblem. S I've kept myself invlved in extracurriculars like theater, acapella grups, and cultural grups. Nt being in sprts isn't ging t ruin yur cllege experience, and there is s much mre grups and clubs in cllege, and that makes it easier t make friends than high schl. I participate in my university's Student Senate, am a leader fr Alternative Breaks, a member f an hnr sciety, and an intern at a plitical campaign. I fill my days with extracurriculars and staying busy, and that ften cmes bldy nses and ther bleeding issues Hemphilia Federatin f America. All rights reserved. 7

8 Been There, Dne That Tips fr the Cllege Bund frm Students & Mms WHAT DO YOU WISH SOMEONE HAD TOLD YOU/WARNED YOU ABOUT? Mms Say: Other advice I have fr students with bleeding disrders is t think abut what's best fr themselves. I knw smetimes dctrs and parents seem t cntrl yur life, but cllege is the start f yur adult career. I knw my mther was wrried abut me getting sick mre ften if I had a rmmate, and suggested asking fr a single rm. I std up fr myself and tld her (plitely) that this was my cllege experience and I wanted a rmmate. It hasn't been an issue since. Smething I wish peple had tld me when ging t cllege is that it's ging t be easier than high schl. I went t a small schl where everybdy knew all abut my disease and me. Cllege is nt ging t be like that, yu can tell everyne r n ne. It's up t yu. I truly wish I had knwn that my bleeding disrder is nt smething t aplgize fr. Whether r nt it seems like I'm incnveniencing my prfessrs r grssing ut my friends, this is a medical cnditin that thers can adapt arund. Cllege has been an amazing experience thus far and I wuldn't change anything fr the wrld. Frm the health services at my university t the adaptability f my prfessrs, peers and friends, I have felt welcmed and lved during my time here. I think he wuld say he wished smene had warned him that advanced math classes required a lt f writing and that Bilgy required a lt f field trips. He ended up changing his majr after freshman year (started ut as a Bilgy majr) switched t Cmputer Science. He fund ut he culdn t keep up with labs and requirements fr Bilgy majr. He still has a lt f advanced math with cmputer science, but mst f his assignments are n the cmputer, much better fr him. He enjys cllege nw. I wuld als say dn t necessarily push yur kid (especially with an inhibitr t live in the drm). It really is a lt t put n them. I wanted him t g t the drm t be independent, but it was really, really hard n his health. He is much better being back hme where I can keep an eye n him. I think he wasn t really mature enugh t handle all f his health demands at 18 years ld. Nw that he is 20, he is mre mature and he is thinking abut mving int an apartment near campus. I wuld still be a little nervus abut that, but think he wuld handle it better this time arund Hemphilia Federatin f America. All rights reserved. 8