About Acceptance

Alice and the sea

At the 11th week of pregnancy, the screening results showed a high probability of having a child with Down syndrome. In order to find out for sure, we did a genetic test. After three days of painful expectation, we got results that stated that Down Syndrome and a whole series of genetic disorders in the fetus were not present, and the gender of the child, a girl, was immediately announced to us as a bonus. If the result were positive, we planned a medical abortion. I’m not saying that this is the right decision and I’m very glad that I didn’t have to accept it, but I promised that I would write honestly. We discussed this solution with my husband when we went for a genetic analysis. True, I did not believe that the result would be positive and there were no unrealistically strong experiences. Yes, analysis, yes, various options are possible, but probably, we poorly imagined ourselves a poor version of the development of events and didn’t really encourage ourselves. So, when Alice was born (and the birth was premature) her weight was 2200 gr., Except for a small weight there were no deviations from the norm. In the hospital, we grabbed jaundice, which is also not uncommon, and as soon as she began to confidently gain weight we were discharged. Up to a year, no developmental features were observed. She began to sit at 6 months old, walked on her own a year, responded well to adults, smiled, cried, loved to draw. In the year she ate her birthday cake with a spoon. There was no problem feeding her, she was almost omnivorous. Probably a positive effect was that I managed to maintain breastfeeding, because in the hospital she did not have enough strength to suck her breasts and I fed her from a bottle. At home, I actively engaged in breastfeeding, I expressed myself and expressed it from the bottle with breast milk, often put it on my chest and it worked out! Alice got stronger and began to suckle herself. I exhaled. Frankly, breastfeeding is much simpler and easier than from a bottle. Since she woke up for feeding every 2 hours, and an hour of these two was spent to express, and then rinse, boil, remove, I slept very little. Once, I woke up from the fact that while sitting in the kitchen I was pouring water from the kettle on myself, apparently I wanted to drink, but I didn’t wake up or fell asleep on the road))) However, such anxieties, especially with regard to sleep, are close and familiar to all mothers, such the situation is far from unique.

Let’s get back to our sheep. Up to a year, everything was fine (I thought so). The first suspicions, even rather unrest, were connected with the speech. In the clinic we were observed regularly and neurologists reassured me that my complaints about the lack of speech were good, all the reflexes were normal, the child was healthy, he would speak. I practically begged for the first procedures. At one of the neurologist’s receptions, it turned out that my legs were a little overestimated, and for this matter I asked for massage, exercise therapy, paraffin boots and a pool. It was Alice 1.5 years. At that time, I did not even think that there could be something serious. Genetics is in order, except for speech, there are no other deviations from the norm, it is catching up. At 2 years old with a little, we invited a neurologist home for a fee. And then it turned out that everything was not at all good. We were diagnosed with motor alalia, roughly speaking, this means that the child understands speech, but certain disorders in the brain do not allow him to speak for himself. This disease has a very high chance of successful treatment. Classes with a speech therapist, defectologist, logo massage, gradually the necessary connections are built up, a skill is formed, speech appears. Of course, this requires work, not only specialists, but also parents, but it’s worth it.

So speech therapists and defectologists entered our lives. At three years old, the diagnosis was changed to sensorimotor alalia, which is much worse than the original version, since in this case the understanding of speech is also impaired. For example, you say: “Let’s go eat”, and the child hears: “Br-mr-tod”. Working with sensorimotor alalia is much more difficult. No, this does not mean that success is impossible, but to achieve it is much more difficult. Later, when Alice was 5, one of the neuropsychologists we studied with told me that with such a diagnosis it is very difficult to achieve speech and that sensorimotor alaliki are often non-speaking children. I don’t know how the rehabilitation process would have developed if I had heard this phrase earlier, at that time I was already mentally prepared to accept it.

Another point that turned our thoughts and feelings over was the advice of a neurologist to formalize disability. Like a bolt from the blue, yes there are problems, but there are successes, there is progress, is everything really so serious? It took us two years to accept this. And the story about the design of disability requires a separate case.

Alice is now 6 years old and 9 months old, she has been going to kindergarten, to the “Special Child” group for the second year, she has a friend Fedya, she has an understanding of speech (not 100%, but she understands simple phrases of three words), words appear which she (about happiness) uses for its intended purpose, mom and dad love it, they “learned Zen” and are not in a constant state of stress, and mom also understands the whole sea of ​​techniques and approaches for speech development. It is difficult to say what moment became a turning point, it was difficult, sometimes scary, always exciting, we, like all parents, went through different stages and denial and anger and came to acceptance. Frankly, life has become easier, life has become more fun. I wish those who are only at the beginning of the journey to meet good specialists, competent doctors and a lot of patience on their way.

The main thing to know is that you are not alone. The experience of communicating with parents of special children shows that in this environment they always receive very warmly, gladly share experiences and always support each other! Remember that the sooner you accept your child with all its features, the faster development will go and the easier and easier it will become in your soul.