How This Little Sister Cares For Her Big Sister | My Perfect Family

[Music] [Music] normally I will wake up around 6ish and I'll come up and say Zoe time to get up Come Morning by one do you go with Mom yes I will said you need to go to toilet and she'll do that and then we'll go on the lounge and see what the actual time is morning morning Mommy hey babe hi how did you sleep bad bad good good so what would you like for breakfast in the to Mama honey or peanut [Music] butter morning routines during school time is a crazy morning and thankfully I have an awesome daughter Tess will do the lunch boxes get Zoe dressed I normally ask her to pack things for Zoe so um I know that they're done and then we kind of do things together or Tess has to do it on our own would you like some for in your Lun today yeah yeah yeah Zoe has a syndrome called wolf hersel it's very hard to explain I would just explain that Zoe has a bit of her brain missing that's why she like she can't talk as well as us how's that toast going down bad wolf Heron is where they missing part of their fourth chromosone it was one of those random Mother Nature experiences it wasn't anything that Bob and I are carrying sing so she would have developed it when she was 8 weeks as an embryo when she was born she didn't form her throat properly so she was cleft pet she had a hole in her heart as well she was epileptic for many years and has fortunately grown out of that she's got various issues with muscle development and Bone development oops we're very lucky with Zoe that she can feed herself the coordination of using hands and forks and knives is very difficult for her and so there's lots of symptoms that they can treat but she'll never be cured of wolf her onop right sweetheart I'm going to go and have a shower so I'm going to leave you guys to it there's your weat bcks love Tess you're okay you going to man the fort you finish a toast please I am good girl we have quite a structured day to try and get everything ready hi Daddy good morning all Bob's working a lot of evenings and so he doesn't get home till very early hours in the morning I try and get the girls to do their own thing so Bob can sleep that little bit longer and gets up a bit later to take them to school good girl put that in Zoe can't do anything on her own she doesn't know how to go to the toilet on her own she doesn't know how to clean her teeth properly on her own she doesn't know how to brush her hair doesn't know how to get dressed go man zo are very close I help her get dressed she helps me get dressed what would you liking your ha Zoe a pat a plat yes I love playing with ha any type of ha whatever it is I would do it Tessa is my guardian angel she's like Mary Poppins practically perfect in every way nice Zoe Tess is 2 years and two days younger than Zoe it was a very different relationship when Tess was first born when Tess was born so we had just started to walk the thing up here she thought yeah man yeah I'm I'm the big sister I'm going to look after this girl no problem at all Zoe really enjoyed those moments cuz she sort of helped Tess crawl and would help feed her and then rapidly Tess obviously overtook Zoe and became the older sister or the bigger sister one or two now I think Zoe prefers the role of being the smaller sister you know she gets away with a lot more for that way bye-bye sweetheart no I'm stay here I can't stay here I have to go to work why work why work yeah cuz I need to earn some money Rosa is The Rock and as a mom she's awesome Bob he's Second To None really when it comes to those girls they love hanging out with him I'm quite serious I try to be fun mom but it doesn't work all the time the equation doesn't quite work out for me being three against one you know I really do try and get the girls on my side by making Rose's life as difficult as possible sometimes as much as I moan about Bob he is really awesome he's he's a great guy uh he's absolutely fantastic father statistically having a disabled child raises those stats of being a single parent never for a minute do I take Bob for granted he's definitely much the yin to my Yan he lacks stuff that I have and I lack stuff that he has and long may that [Music] continue [Music] [Applause] [Music] [Applause] [Music] Hey Zoe you have a good at school Zoe and me go to the same school Zoe's in your six so she's only got one more year do you want me to jop you I'm year five I've got two years I'll come pick you up after school's normally I would drop her off I'm like oh I just want to stay here for five minutes to just make sure she's fine and then I'll go to my classroom right we're going to do this one now show you what this one we're going to do Zoe has a teacher a called hither she is a very nice lady if hether wasn't her teacher aade then we wouldn't know exactly what to do where's his mouth where's his mouth his mouth has to go under yeah doesn't it if I write something she will go over the top of it that's the limit that we're at but she knows words she knows her letter starts with what letter what where where's the Z for Zoe good girl where's an O where's an o o o who's an O good girl and an e for elephant yeah we a e for elephant good girl this is my third year with her I would like to carry on with Zoe if I could this is her last year at with the Lee so hopefully next year when she goes to intermediate that I could follow with her if they'll take me no oh they oh okay you don't want me to no when Zoe first started there was quite a few kids that didn't really get why she couldn't talk or why she was so tiny or why she had a bit of a different look and they did a little story on zoee and they put the story up in the different classrooms and got the teachers to explain the story and who Zoe was one of the good things is that Zoe is maintained a little cluster of friends through her years at withle but yeah she just loves Tess and Tess would do anything for Zoe and is very supportive and sticks up for her where do you want to go to S so normally lunchtimes Zoe will either come over to me or she will stay with her friends yeah sometimes Zoe does come here by herself she normally runs off without me and then I'm like where did she go and I look around the whole school and then I find her in here if I hear somebody saying mean words to Zoe I say please don't say that it's none of your business just go away and leave her alone and leave me alone I don't like you saying that I feel very it will hurt Zoe's feelings even if it doesn't show it and it will really hurt my feelings I worry about Zoe moving into her next phase and going into a bigger School she'll have a year at Bol on her own without test I'm worried that she'll get bullied she'll have to have a new teacher Aid she will have her classmates but they might not necessarily all be in her class so yeah there's a lot of things about that that I'm apprehensive [Music] about [Music] [Music] on properly three good girl good girl hands up off the sadle you don't need to hold on Zoe loves riding for the disabled it's something that is hers and she's good at and she really enjoys we got her her own riding helmet and she's got little riding boots and Jers and all kitted out and she looks super fancy we're going to practice our steering so do you see those big orange cones there yeah you're going to go round to the cones and you're going to weave rocket in and out okay out out in and out okay okay all right what do you say to Rocket good girl it's definitely got her a lot more confident with the guard to um animals everyday life well I mean that's changing every day last year she picked up most improved Rider you know there's every possibility that um she's heading towards the Special Olympics and that's our goal definitely zo I mean she she loves riding good job hurry it's it's one of the the benefits on when I became a stay-at-home dad five six years ago set up straight Zoe good girl gave me a lot more opportunity to witness the development of Zoe and programs like this you know years one and two when she was a weed dot we we just yeah we just didn't realize that uh she would give us uh so much uh Pride oh I'm cry slow BL what do you reckon it's hard does that bum up high up to the roof there you go good girl you feel high don't worry we've got [Music] you din time we're going to make dinner you want pizza excellent what's this one uh chicken chicken good girl good job R Pizza okay one on there I got a letter today from your dietician and we need to have a follow-up meeting and make sure that you're putting on lots of weight aren't we so I have bought not only me mozzarella but we've also got what's this one what does that say um that's your favorite one isn't it Bri yes so we need lots of cheese on your your pizza now yeah tonight so we can help you put on some weight is that okay yeah her immune system is pretty rubbish but she as a child is much stronger and so one thing that we have to do is maintain her weight so her body's dealing with colds and bugs and flu and all the rest of it as much as she can so that is one concern with us is that she'll um with her poor immune system is that she'll pick up too many bugs and um and that's what will fail her in the end carrots and cucumber we try not to put too much cotton wool around her or anything she has to get bugs and to get stronger going to eat all your salad first but just to monitor it and make sure that we're not sort of pushing her too much that she has enough rest that she eats well and that she's not forced into an environment where there be too much [Music] illness guys up zo okay when Zoe came out of my mom's tummy they mom couldn't hold her they had to rush her straight to another doctor my Daddy has an extremely she was month premature and very very tiny so we stayed in hospital for a couple of weeks and while I was in there I'd have to wait for the nurses to feed her properly and when they came in to feed her as she was crying the nurse saw that the back of her throat hadn't been formed properly and they did some blood tests when the results came back and we sat with our pediatrician who had the worst bedside manner he gave us this sheet of paper um with the you know explanation of wolf Hera and said this is what I always got on the piece of paper it was she would look like she's got a face like a Greek warrior helmet with the eyes quite wide would say that she was mentally physically disabled epileptic he explained if you have any questions let us know um but it's likely that Zoe Won't Last a year myself and Rosa looked at each other looked at Zoe and just like nah you know this a yeah so Bob and I decided that we would pretend that she didn't have W she wouldn't have Fair Sean and we wouldn't tell anyone and it would just be our little secret it was quite a long time before we really came to terms with it and then it got to the point where it was actually really quite obvious that Zoe wasn't really growing and So eventually it became just part of life and that was just the way it was hooray for princess piba hooray for Prince George the brave [Music] hooray mommy yep see we all right we [Music] go so in this big trash can is all of zo's paper that she likes to rip she always goes under my cuz I have a stash of paper under my bed so she always goes under my bed to get like around that thick of paper and I sometimes catch her and I go o what are you doing with my paper so when she was a baby she always had she never let go of her thumbs till she was around oneyear old and then she finally let go of them and then her thumbs were like bent B and we've we're letting her like rep play with Playdoh and like do and play play on our iPad because that helps her with our [Music] thumbs let's make a for yeah yeah so I love the weekends because I can have friends over and all my my friends are also very nice to Zoe so like my friends are like best best best friend to Zoe as well bit too big maybe socially she's a very social child loves being around other kids likes playing and all the other things that an 11-year-old enjoys doing do I have no no could I be a pit no not really no Tes my sure that Zoe is part of the game or or whatever needs to be done okay zo in 3 2 1 what are you Zoe yay it'd be nice if she could have a few more playd dates but I appreciate that it's probably quite hard for parents to take um Zoe on and the responsibility of Zoe so we try and have some playd dates here but it's very tiring for Zoe again having people come over so it's just getting that balance right of fun and rest okay okay okay Zoe Let It Go Let It Go Let It Go Zoe sometimes if it's like every single day it will get annoying because it's kind of like Zoe stealing my friends from me it doesn't happen that often but I'm fine with her doing it as long as it's not every day Tessa is pretty brilliant but she's nine and I think sometimes she knows that she needs her time out I think that's really mature and sensible than constantly having that pressure and not giving yourself the time out and then letting it get on top of you and resenting it and so at the weekends we separate them for a little bit we let them chill out in their rooms whether they're on their iPad or whether they're reading a book or doing some coloring also Tess has different activities that she does like gymnastics swimming um boxing uh which Zoe isn't involved [Music] [Applause] in Tess got into gymnastics a couple of years ago and it's kind of a real social network for her and a bit of connection with friends from school and then friends from other schools and blend them [Music] too what do you want to do some yoga with me yes yeah okay so what do we do first stretch nice up look up at your hands give it a nice big smile deep breath in and back down that's it how good does that feel better better yeah high five good job we try and do it a little bit more often cuz it's really good for her legs and um we need to sort of work with her knee cuz she has a bit of a a tendency to hop when she runs do you enjoy yoga with Mommy no no do you enjoy doing things with Mommy no no Daddy just with Daddy yeah a that's nice [Music] she just loves water especially if it's warm water she started off in the bath and then just lying down on her back and she was like swim swim swim mentally for zoi activities like swimming and riding are immensely important that increases the level of Independence that she can have she can learn to swim then enables us to say look this is your doing so it's not us doing it it's you doing it and that's the biggest thing with PA f is There's Hope and you've just got to let them do what they do when they do it they will do it might not be today might not be in a year might not be two but they will do it I'm glad that she has her own things because if like she didn't have anything or if she just did stuff like me I thought it would be a bit boring and a bit not [Music] fun stay on the concrete Zoe I sometimes I can get a bit lonely but then I just say Zoe going to play this she will say yes or no if she does say no I just think of another game to play or I just have to do it by myself so you're going to be Charlie or COC Char Coco yes we love making plays a comedy one like because if it wasn't comedy wouldn't be funny it wouldn't be enjoyable I want to make plays with comedy in it so we're going to do a play for M oh what you excited no yes you are so we'll be walking and then we'll find some random stuff and then we're going to play with that stuff and then suddenly we're going to be like with SWAT bodes yeah okay what a what why am I wearing this what happened I they do have moments where they're not as happy with each other in that particular time but it's really few and far between no mom Zoe Tess gets quite frustrated because Zoe doesn't really know how to play in a normal sibling relationship you know certain things that they want to do like if they want to color Zoe will often color on Tess's picture and that will drive Tess nuts um but she won't do it to um annoy test she's just doing it because that's how she plays lights camera action hey cocit why am I in Charlie's body we've got to tell mom come on Zoe has really taught all of us a lot more patience don't get me wrong I still have my moments where I am the most impatient person I've come to the end of my tether what I'm going to have at A Moment Like This but that's life and that's normality and I think at the end of the day if we can all tell each other that we love each other and give each other a kiss and a hug it's it's a good [Music] day you're crazy well done guys well done you did you have fun did you sweat bodies no no [Music] ow yeah good job zo [Music] oh [Music] me who FES a sit down yeah if it was just me Bob and Zoe I don't think Zoe would be who she is now I think Tessa has really contributed a lot to how Zoe has progressed I certainly think that Bob and I have worked very well with Zoe School works well with Zoe I think riding music swimming everyone works really well with Zoe but but Tess helps not all of that together for test so is obviously drawn out all that positive energy that Tess has and all the good things that make Tess a good person just love the fact that we have two daughters that pretty cool to each other the bond that Zoe and Tess have is it's it's unbreakable I love her to the moon and back a thousand infinity I always want me and Zoe to be best friends no matter what we will still be best friends always always always always always be best friends I have a huge amount of love and respect and pride for my girls but yeah I love both of them don't make me cry yeah that is [Music] good

Channel: Origin

Views: 13,582

Keywords: origin, full documentary, documentary, full documentaries, real life stories, real life, Full episode, family documentary, real families, real life family, my perfect family, autism, autistic children, autistic, spectrum, autism spectrum, non verbal, non-verbal, living with autism, adulthood, autistic sons, raising kids, parental documentary, raising kids with autism, how to raise children, parenting 101, little sister, big sister, big families, wolf hirschhorn syndrome, carer

Id: Q4HSAo7X5V0

Length: 27min 33sec (1653 seconds)

Published: Tue Apr 30 2024