«Аутизм коварен: мне казалось, что со Степой все в порядке»

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«Степа у меня единственный ребенок, мне не с чем было сравнивать. Я все принимала как есть. Например, одна знакомая мама организовывала домашние музыкальные занятия. Степа никогда ни в чем не участвовал, ни за кем не повторял, на детей не обращал внимания. Сейчас-то я понимаю, что все это были признаки. Но тогда мне просто казалось, что у меня необщительный ребенок. А что не разговаривает — ну так мальчики всегда позже начинают».

Родителям 

«Аутизм коварен: мне казалось, что со Степой все в порядке»

Александра Петрова, 32 года и Степа, 7 лет

Вообще рождение ребенка было для меня как спасение. Я запуталась в жизни, разочаровалась в себе, в будущей профессии, не знала, как и куда двигаться дальше. Когда я узнала, что беременна, сразу поняла, что будет мальчик и я назову его Степой. Я ждала его одна, но очень помогли родители и друзья, окружили меня заботой и любовью, и я не чувствовала себя ущербно. Уже все сроки прошли, а Степа никак не рождался, и в результате мой врач назначил день операции.

Мальчик мой сразу всех поразил, потому что при рождении весил почти 5 килограммов и рост был как у двухмесячного младенца. Это было настоящее чудо и огромная радость. Я пошла и покрестилась, мне было 25 лет, потом покрестила Степу. Мы жили вдвоем, и нам было очень хорошо, хотя временами и трудно. Родители всегда были рядом, если нужна была помощь. Они и сейчас очень поддерживают меня, хотя я понимаю, что Степа — это прежде всего мой сын и моя жизнь.

А потом меня вызвала заведующая и сказала: вам лучше бы в коррекционный сад. Для меня это был абсолютный шок

Легко никогда не было, но был оптимизм. До двух с половиной лет мы жили прекрасно, пока не пришло время социализироваться, идти к людям, вписываться в систему. Для меня изначально это был стресс, и я хотела, чтобы Степа пошел в самый лучший детский сад в нашем спальном районе.

Подошла наша очередь, и нас пригласили в группу кратковременного пребывания. Степа ни в какую не хотел туда заходить, громко кричал, чем и привлек внимание заведующей. Второй раз нас пригласили уже к психологу, и та насторожилась. А потом меня вызвала заведующая и сказала: вам лучше бы в коррекционный сад. Для меня это был абсолютный шок. А тот первый детский сад я долго обходила стороной. Даже мимо проходить было больно. Всегда не любишь гонца, который приносит дурные вести.

Что было после, плохо помню. Наверняка я как-то собралась. Надо же проходить медкомиссии, искать врачей. Попали к хорошему психиатру, он первым мне сказал про «аутистические черты» и сказал: «Идите в коррекционный сад, не бойтесь, потом не захотите уходить». Мы проходили в сад полтора года, и, к сожалению, Степа никак не развивался, мы проходили исследования, посещали всевозможные консультации. Дети там были совершенно обычные, с небольшой задержкой в развитии, практически норма.

Мне стало легче, как только я приняла диагноз

Из детского сада пришлось уйти, нас записали в лекотеку, это что-то вроде группы детского сада, где на несколько часов в неделю собираются дети с более серьезными нарушениями. Были ребята с синдромом Дауна, и ДЦП, и другие. Все вместе.

Когда мы пришли в первый раз накануне Восьмого марта, было симпатичное чаепитие, все принесли с собой какой-то десерт. А я все время задавала себе вопрос: почему я здесь? Вокруг меня всегда были обычные люди с обычными детьми. Что я делаю на этом странном празднике? Но к этому привыкаешь довольно быстро. И проникаешься, главное, огромной любовью и сочувствием к самоотверженным родителям, у которых дети неизлечимо больны. По сравнению с ними у меня, можно сказать, вообще нет проблем.

Я помню, в лекотеке была одна мама, которая никак не могла смириться, не хотела принять ребенка таким, какой он есть. Все хотела его вытащить, вылечить от того, от чего вылечить нельзя. И я видела, как она мучается. Мне, наоборот, стало легче, как только я приняла диагноз.

Аутизм коварен тем, что внешне ребенок — совершенно обычный. Но вдруг он устраивает истерику

Аутизм коварен тем, что внешне ребенок — совершенно обычный. Но вдруг он устраивает истерику, ужасно себя ведет — и все смотрят на тебя с осуждением: плохо воспитывает, плохая мать. А объяснять трудно. Я не могу заставить себя произнести незнакомому человеку: мой сын — аутист. Мне нужно работать с этим. Наверное, нужно к психологу. А сложнее всего объяснять детям, они задают очень прямые и больные для меня вопросы. Максимум, что я могу им сказать, что он плохо разговаривает. Но легче просто избегать многолюдных площадок. Все время боюсь, что Степа что-то сделает не так и мне придется перед всеми отчитываться.

Эта моя закрытость рождает непонимание между людьми. Я, конечно, всегда стараюсь встать на точку зрения обычной мамы, понять, что она чувствует, но меня все равно переполняют эмоции. Хочется крикнуть: «Вы не понимаете своего счастья, у вас — здоровый ребенок!»

Я не отгораживаюсь от людей нарочно, это само происходит. Не хочется лишний раз кого-то напрягать. Но я стараюсь поддерживать общение с друзьями, ходить в кино и на выставки. Не зацикливаться только на проблемах, и совершенно не хочу об этом постоянно говорить. И очень боюсь, что у друзей и родных может сложится впечатление, что я могу говорить только об аутизме и проблемах, связанных с ним. Наоборот, так хочется порой отвлечься от этого всего.

Сложнее всего объяснять детям, они задают очень прямые и больные для меня вопросы

Жизнь у меня, конечно, совсем другая. И она уже не будет такая, как у всех. Но все равно я воспринимаю ее как счастье и радуюсь мелочам. И очень ценю людей, которые остались рядом со мной.

Сегодня вот два часа в центре погуляла, пока Степа был в школе. Сидела на лавочке в Аптекарском огороде, ко мне подошла девочка лет трех с букетом из осенних листьев и говорит: «Это вам». Я заплакала. И дело тут не только в нервах или сентиментальности, а в постоянном ощущении своей уязвимости. И вместе с тем — огромной силы. Особенно когда я со Степой.

С каждым новым этапом я чувствую себя сильнее. Однажды напротив меня в метро ехала женщина, на коленях у нее сидел ребенок с особенностями. Мама была очень аккуратно одета, тщательно причесана, и во всем ее облике было столько спокойствия и достоинства. Я прониклась к ней огромным уважением!

Я преклоняюсь перед всеми родителями, воспитывающими детей с особенностями. Это невероятно мужественные люди, и мамы, и папы. Особенно меня восхищает, когда я вижу, что у них получается относиться к своей жизни не как к подвигу или ошибке судьбы. А они живут полноценно и умеют радоваться. И это пример для меня. Я стараюсь. И помню, что Степе очень нужна счастливая мама.

Источник: psychologies.ru

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