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С ДЦП в провинции: «Нужно было жить дальше»

Елена Биткина проживает в Челябинске. Ее младший сын, шестилетний Ярослав – ребенок-инвалид. Его диагноздетский церебральный паралич в тяжелой форме.

Расскажите, каким ребенком растет Ярослав, чем он любит заниматься?

Елена: Ярик любит все мультики и игрушки, особенно подвижные, которые летают или бегают. У нас тяжелая форма, двигаться и переворачиваться самостоятельно он не может. Взять игрушки руками пытается, но не получается. Из-за этого все наши игры подвижные, обычно мы берем его на руки. Ярик не вредный и не капризный, очень любит других детей, спокойно относится к чужим людям. В этом плане с ним проблем нет.

Когда вам поставили этот диагноз?

Елена: Таким детям ставят диагноз достаточно рано, до года. В 8-9 месяцев мы уже оформляли инвалидность.

Какой была ваша первая реакция?

Елена: В 2.5 месяца, когда ребенок не поднимал голову, я начала понимать — что-то не так. Надеешься на чудо, но ближе к году чуда не происходит. Ты все еще этого не осознаешь и думаешь, что все можно исправить. Самым сложным был период до трех лет. Из них два года я посещала психотерапевта.  Мы делали все, что могли, ходили во все центры. Когда Ярославу исполнилось три, я поняла, что надежды уже нет. Я начала это принимать и понимать. Нужно было жить дальше. Есть даже специалисты, которые работают с родителями таких детей. Я посещаю семинары, меня там подбадривают.

Получаете ли вы пособия или иную помощь от государства?

Елена: В зависимости от степени тяжести, ребенку должны предоставить средства для реабилитации: стульчик, коляску, вертикализатор. Но то, что нам выдают – для использования непригодно. Или выдано тогда, когда ребенок из этого уже вырос. Мы покупали свою коляску самостоятельно. Кроме техники, мы получаем пособие в размере 15 тысяч и скидку в 50% на коммунальные услуги.

Хватает ли вам этих средств на уход за ребенком?

Нет, хороший массаж стоит дорого, а делать его нужно каждый день. Я не знаю, как бы мы жили, если бы не наш папа. Не представляю, каково матерям-одиночкам. Это просто нереально.

Государство должно предоставлять детям с ДЦП возможность бесплатной реабилитации. Так ли это?

Елена: Бесплатной реабилитации в Челябинске фактически нет. За врачами нужно «побегать», массаж делают 20 минут вместо положенных 60. Это не дает никакого эффекта. Качественные услуги можно получить только в платных клиниках.

Вам помогает какая-либо общественная организация?

Елена: Нет. Мамы больных детей сами поддерживают друг друга. В основном через социальные сети, создают отдельные чаты.

Россию называют «страной косых взглядов». Сталкивались ли вы с ними?

Елена: Постоянно. Люди злые, могут тыкнуть пальцем на улице, задать некорректный вопрос, не пропустить с ребенком вне очереди. Эти моменты не очень хорошие, но к ним привыкаешь. За 6 лет стало чуть лучше, мир не без добрых людей.

Чего не хватает нашей городской среде для комфортного пребывания?

Елена: Не хватает нормальных съездов для инвалидов, пандусов. Не всегда получается заехать даже в аптеку. Кнопки вызова персонала не работают. В нашем доме не оборудован лифт – в него не входят задние колеса коляски. Мы оставляем ее в машине, Ярослава несем на руках. Но основной вопрос – это средства реабилитации и лекарства. Мы вынуждены все покупать за свои деньги.

Лифт в доме, где живет ребенок-инвалид

ДЦП – один из самых тяжелых диагнозов, столкнуться с которым может каждый. Жить с ним тяжело, а без поддержки государства – еще тяжелее. Челябинск не подходит для жизни людей с инвалидностью: нехватка реабилитационного оборудования, отсутствие специалистов, недоступность бесплатной реабилитации и ограниченность передвижения. И это – региональная столица. Стоит ли говорить о поселках и деревнях?

Провинциальным городам России еще многое предстоит изменить, чтобы качество жизни людей с ограниченными возможностями стало лучше.

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