Friday, October 13, 2017

Special Needs Spotlight || Will and Harri

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Hi! I'm Alison and I live in London, UK with my husband Shaun and our three children, William who is 7, Harriet who is 5 and Sadie who is 2. Will and Harri have Pendred's Sydrome and are both profoundly deaf and wear cochlear implants. Will wore hearing aids until he was 4 and half when he ran into a tennis net and fell backwards onto his head. He had concussion and recovered well but literally went deaf overnight. He went to bed hearing and woke up saying his hearing aid didn't work anymore. This was 3 days after my husband had received a cancer diagnosis so pretty rough timing. Will had developed well with his aid and was a predominantly oral child so it was very, very hard for him to be without sound while he waited on surgery for cochlear implants and then them being switched on and then mapped (a total of about 3 months). Since having the implants however, he has done brilliantly. He only wore a hearing aid on his right ear but is implanted in both ears which makes a massive difference to how much sound and therefore speech he is able to access.

Harriet was born profoundly deaf and was put forward for implants straight away but the process takes a long time--she was 22 months when she had her first surgery. During this surgery she lost her vestibular system (balance). She went into hospital a physically normal toddler and came out unable to hold her head up, crawl, sit, stand or walk. She will never get her balance back but has learnt to compensate using her eyesight and touch and is thriving as an active 5 year old. Unfortunately her cochlear implant road hasn't been smooth. A year after implantation one of them spontaneously failed (1 in 100 do) at the same time as Will fell and my husband was sick (and Sadie was just 8 weeks old) and had to be replaced. Then a year after that she got a really bad infection and had to have her implant removed and was reimplanted 8 months later. Then this year in April she had another infection. Thankfully everyone acted quickly this time and it was stopped with a course of IV antibiotics but she still spent a week in hospital and a few weeks without her implant (meaning it needed to be remapped and turned down because the hearing nerve gets very sensitive very quickly). Because of this her hearing hasn't really ever been consistent but she's not let any of it stand in her way. She is a feisty little character and I wouldn't have her any other way!

Both the kids use spoken English and British Sign Language to communicate. They go to the most gorgeous school for the deaf where they learn to be proud of who they are as well as to achieve academically. It has been an uphill struggle to this point but both kids are a credit to themselves and to implanted deaf kids everywhere.

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Miggy: Welcome Alison! Thank you so much for being here on This Little Miggy today sharing your story and your beautiful family with us. First, can you take me back to the day you knew your kids would be deaf? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?


Alison: We didn't officially know Will was deaf until he was about 6 months old. When he was first born he failed three newborn hearing screenings and so was referred to a hospital for further testing. For the tests the baby has to be in a deep sleep and so it was difficult to get an accurate reading. For months the doctors just said "we can't get a positive result" and I wish one of them had said to me "this means that he might be deaf" rather than allowing me to continue assuming it was just a matter of time until we knew he wasn't. When they eventually said it I was floored. Because he had had so many tests that lead to nothing I was on my own with him. I remember so vividly standing at the bus stop outside the hospital texting my parents and my best friend that my heart was broken. It was the first time that it really genuinely had been.


Because we have no family history of deafness Will had to undergo a lot of other tests to find out why it was he was deaf. I left with appointments for an MRI, an ECG, blood tests, a kidney scan and genetic testing. As well as appointments with a Teacher of the Deaf, a Speech and Language Therapist and a British Sign Language teacher. All of this made me feel like my baby was sick or in danger which of course he wasn't. But I knew nothing of deafness and so was distraught. Now I know so many deaf people and I know that they are no different to you or I. All of my worries that he wouldn't make friends or have a relationship or children or a job or a future at all were so totally unfounded. Now I see him and his deaf friends and hearing friends and how happy he is and how lucky we are to have the privilege of being his parents.

Harriet failed her newborn hearing screening hours after the most fantastic birth. I clearly recall how my heart felt like it had been crushed. There is a 25% chance that any of our children will be deaf and for it to have happened twice was very painful. Will was only 22 months so I didn't know that he would develop such brilliant speech and BSL skills. I just knew I now had 2 children that I had let down and had no idea how to raise. I was outwardly stronger with Harri's diagnosis and I fought for what I now knew she needed, so people would say "it must be easier the second time round." No. No it is not. In fact it is much, much harder. Harri has gone on to have quite a tricky journey with hearing so I do still feel some of the pain and doubt I felt at that first diagnosis. But she is happy and vibrant and proud to be deaf.


Miggy: Could you please educate us about your children's diagnosis and explain how your children’s needs affect your day-to-day life? Also, can you educate us about your children's cochlear implants Was it a difficult choice, what are the pro's and con's of getting cochlear implants?

Alison: My kids both have a genetic defect called Pendred's Sydrome that my husband and I (and our third child) are both carriers of. Pendred's Syndrome is degenerative which means that the kids were always going to be profoundly deaf at some point and we were going to have to choose whether or not to give them cochlear implants. They had them at different ages and have had very different experiences with them. Daily the main thing is that when they are wearing them they are definitely working. They each take 2 batteries that only last a day so we are going through 8 tiny batteries every 24 hours. They also have wires that can break and they are susceptible to moisture damage so in the summer can get faulty from sweat. Harriet isn't as tuned into her hearing as Will and so doesn't always realize when one of her implants isn't working so I need to regularly check for her.

They go to a school for the deaf which is relatively far from my house and so they go on a school bus (this is unusual in the UK, most children walk to school). Because of this their day is longer than the average school day and so they are very tired. The school is bilingual in that everything is spoken and signed for the children which is fantastic but again tiring. Both kids hear very well with their implants on if you are facing them and the room is quiet. However this can be difficult to achieve in a family home with three children all vying for attention. If they run ahead in the street you can't call them back and they can't wear their implants in water so bath times can be challenging!

Cochlear implants are an actual miracle. They are the most amazing piece of technology that I am forever grateful for. But they do not restore natural hearing. They give access to sound which means that my kids can use that access to develop speech and fit in better with society. The implant itself is the bit that goes inside the head. The surgeon drills through the skull and inserts a tiny wire with 12 electrodes into the cochlear. It is these electrodes that stimulate the hearing nerve and that allows my kids to hear. At the other end of the wire is a magnetic plate that they sit flush with the skull. You can't see it from the outside (especially if the child/person has hair) but you can feel it. Then there is an external processor that is the computer that hears the sound and stimulates the electrodes. There are various models but my kids sit on their ears similar to a hearing aid and then there is a coil that adheres to the magnet in their skull. How well they can hear massively depends on the person. There is a lot of evidence to implant early for maximum benefit but this depends on the severity of the deafness. 

Will had good access to sound with his one hearing aid for over 4 years and so his natural hearing nerve was stimulated. If this happens the brain paths for communication can form and this makes implantation more successful. The big pro is obviously that they can hear so in theory they can develop speech and therefore access a little more of the hearing world than they would be able to if they were profoundly deaf. There are risks with the surgery (like there are with any surgery) and unfortunately in Harriet's case she was affected by the damage to her vestibular system. She has had such a turbulent road with her implants that I often wonder if we made the right choice in having her implanted at all. I would love it if all our friends and family (and the rest of society) just accepted she was deaf, learned sign language and the world was changed for her but unfortunately that's not how the world works. The minority are expected to change to fit in. While I do feel bitter about this I also accept that right now that is how it is. And to give Harriet the best opportunities in life we had to give her a chance with the cochlear implant. Perhaps when she's older she'll decide not to wear it, but at least it will be a choice available to her. 
Miggy: What are the biggest worries you face for your children? On the flip side, what are your hopes and dreams for them?
Alison: My worries have changed a lot over the years, as do any parents I guess. I used to worry that they wouldn't talk or be able to make friends but they can do both of those things. Now I worry about acceptance, about the barriers that they will no doubt come up against. I worry that society isn't progressing fast enough at acceptance and tolerance for them to be able to succeed in whatever it is they choose to do. I worry that people will be mean to them and mock them.

My one hope and dream for them is that they make good friends. We have been through an awful lot in the past 10 years and I could not have survived it without my friends (and my husband and my mum, who are some of my closest friends). Being able to have healthy relationships is so important. Life is hard, but hard is manageable with people in your corner. This is the main reason I'm so proud of our choice to raise them as bilingual. They are in a funny half way house as far as deafness is concerned. There is the Deaf community that use sign language and don't see their deafness as a disability or a barrier and I hope that my children can be accepted into that. They already have strong links through their school. But because of their implants they are also able to be part of the hearing community. They can hear and speak. I really hope that as adults they are able to communicate with both deaf and hearing people and both have friends across the spectrum that accept them for who they are.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Alison: I'm sure there are plenty but the one that sticks in mind is when Harri lost one of her implants. One of them was broken and at the hospital to be repaired so she had one at the time and I realized it was missing. I signed to her, "Where is your implant?" and she just shrugged nonchalantly like any 4 year old would. I went into the downstairs toilet and noticed that she'd done a poo and not flushed. The worst thought crossed my mind. I went back to her and signed, "Is it in the toilet? did you drop it in the toilet?? Is it in your poo???"To which she nodded, yes. So I went back to the toilet and put my hand in. PUT MY HAND IN A BOWL OF SHIZ. Right up to my elbow. I was digging around - I did not know how toilets worked until this point in my life. I had my hand in and around and I was squashing the poo in my hands to try and find the implant (they are worth about £5k and the thought of going to the hospital and saying that I had not only broken one but flushed one more was too much). After about 5 minutes of this I resigned myself to the fact that it was gone and nothing was worth this much poop. I went back to Harri to tell her it was gone. As I arrived at her she bent down, picked her implant up from the floor right next to where she had been standing this whole time and said "Oh here it is," put it back on and sauntered off.

We have also had a lot of funny moments with sign language, both my mum and my husband try really hard but often get it wrong. Last week my husband and I were out for lunch and he was trying to discretely tell me that the table next to us had ordered a dozen oysters but all I got was 17 dizer which of course I said really loudly "What? WHAT? SEVENTEEN? What? D I Z E R what?" much to his embarrassment.


Miggy: OK, I'm dying...those are two of the funniest stories I've had on here in a while! OK, switching back to a more serious topic I know that the deaf community is a really strong and proud community--as they should be! Of course how society views them--and people with disabilities in general--is another thing. Therefore, how can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Alison: I wish people understood that cochlear implants were not an instant cure and that they still need to make sure my children can see them when they talk to them. I wish people knew that noisy places are totally overwhelming for them. The best thing people can do is be patient, it can be frustrating sometimes talking to them, especially if you can't use sign language to help them understand you. Raising your voice does not help. Turning up the volume does not help. Speak normally and repeat yourself if you need to. Do not ask me to be a translator for you, that is insulting to both them and to me.

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to Will and Harri, or the relationship between Will and Harri?

Alison: In the moment we were told that Harriet was deaf my husband and I looked at each other and said "At least they have each other." I am so grateful that they are both deaf. While it made it so indescribably hard for me when they were both young with all the appointments and then when they both ended up needing surgery at the same time as each other (and as my husband), they understand each other in a way that I could never match. One of the things I find hardest about parenting deaf children is that I will never understand what it is like to be deaf. I can be there for them and I can learn sign language and support their schooling and try my very best to support and encourage their deaf identity. But I can never really understand it. I love that they have each other to grow up with.

I also love that they have Sadie and that she can hear. It can be very hard to have the conversations about when Sadie will get implants (and that she won't), or that the deaf kids feel sad that she can hear and they can't, but I think it will help them in the long run to have a mixture within their little family. And hopefully the three of them can help me in my long term goal to divide the gap in society between abled and disabled. They already know that one another are essentially the same and that what's important in life is kindness and love and if they know that, then there is a chance they can spread that message far and wide.


Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom? 

Alison: That anything can happen to anyone. There is no luck in life, no reason behind anything that happens. Genetics are fascinating and you genuinely never really know what's inside your own body. I have met so many special needs mums online and in real life and they were all as heartbroken as one another when they first found out--because they never expected it to happen to them.

And that you never really know your true strength as a person until you are a mum, in particular a special needs mum. A lot of people say to me they don't know how I do it and that they couldn't do it. Of course they could. The children are a piece of my heart and I will do anything to make sure that they have every chance in life.

Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Alison: I would say breathe, stay calm. Don't jump to the conclusion that they have no future; that they will suffer because of this. Go and meet people with the same diagnosis, older children, adults. Meet them and realize that they are people. People with hopes and dreams and achievements. People who laugh and love and yes have had to work that little bit harder than if they didn't have special needs. But that makes them even more beautiful than you can imagine. If there is a culture surrounding your child's diagnosis, embrace it, for their sake. This is not your journey and these people can help your kids in a way you can't. And that's okay.

Keep going. There are rough days ahead, Days harder than you know. But you will get through them. These are your people. Just because they aren't what you expected doesn't mean that you have let them down. You are still their mother and no-one can love them harder than you can. And at the end of the day, as long as you love them, they will be okay.

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Alison--thank you for sharing your story, your heart and your strength. You have been through the wringer and then some and I'm grateful to you for opening your heart and sharing all of this with us. First, I still can't get over the poo story--KIDS! Second, you had so many nuggets of wisdom to share it's hard to narrow it down. Thank you for explaining cochlear implants and the amazing yet complicated relationship your family has with them. To be honest, I had no idea how they actually worked--I assumed they restored at least some measure of hearing. As much as I love social media, the short video clips we often see of disability and technology coming together--cochlear implants or prosthetics (grrr)--often leave the public with big misconceptions. So thank you. Additionally, it's important to understand that what works for one kid, doesn't necessarily work for another--individual situations and circumstances will vary greatly from person to person. Lastly, I love that you said, "Life is hard, but hard is manageable with people in your corner." Amen to that. No one does it alone, and we're not supposed to. We need the love and support of friends and family to shoulder part of the burden when life gets too overwhelming. That is actually how life is supposed to work. Thank you again for sharing your beautiful family and best of luck to you and your brood. Here's to hoping we can change the world together! 

Once again a heart felt thank you to all my special needs spotlight families. I have learned and grown more from this series than you will ever know. If you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com. And if you don't hear back from me right away, please ping me back and be patient. I'm a one woman show over here and sometimes it's hard for me to get to you right away. 

Have an amazing fall weekend. 
XO, 
Miggy

4 comments:

  1. Anonymous7:05 AM

    Thank you Alison and Miggy, this was very interesting. I have a basic knowledge of cochlear implants, but didn't realize the real-life logistics that come along with them, like changing batteries daily, or the possible complications of infections, etc. So many of us think well you get them, turn them on, tune them a little and good to go. Alison, your kids are adorable and I hope their dreams come true.

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  2. Dear Miggy,

    I love all the spotlights for the different people you introduce us to, and for the knowledge I gain, but this one really speaks to me personally.
    I do not want to presume that I know and understand what you have gone through when you received Will's and Harriet's diagnoses, Alison, and what it is like to worry about their acceptance into society.
    But I myself suddenly (within hours, literally) lost most of my hearing in one ear, at age 24, and received a cochlea implant about 9 months later, so this reminded me of the months of trying to find out what happend (I never got an explanation), and how surreal it all appeared to me. And though my left ear is completely fine (apart from some tinnitus), I struggled with severe balance issues for quite a while, and they come up again sometimes. You are very right in saying this can happen to anyone - even later in life (if only people realized, many would behave differently). I am so, so grateful for my implant, but having to make these decisions for your children can't be easy. I am sorry Harriet's history with the implant hasn't been very smooth, to say the least, and I hope and wish for you that it'll get better. I guess what I want to say is, I feel with you.
    I love that you raise your children bilingually - sign languages are absolutely amazing, and I wish they were widely taught in schools. I also absolutely adore the decorations on Will's and Harriet's sound processors - would you tell me where you got the birds and princesses (are they exclusive to your manufacturer)?
    Thank you for sharing your story, I wish your family the very best for the future!

    And Miggy, thank you for the spotlight and your entire blog - it is, without exaggeration, one of my most favorite places on the Internet :)

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  3. What a wonderful family. Thank you for sharing!

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  4. Yes, a wonderful family, and beautifully written/told.

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